Yesterday we attended the 5th Annual Craniopharyngioma Picnic. We had a wonderful time meeting up with all the cranio survivors (14 in total who made it into a group photo) and their family members. As predicted, it was very hard for Sasha to handle himself around the desserts and there was some drama that developed between HO Monster (HOM) and Kitchen Bitch (KB). KB refused to allow HOM to have a cookie or any other sweets for fear of the escalating addiction cycle and HOM was NOT happy about this. As KB was standing down the HOM, things were getting ugly but luckily Sasha's dad came to the rescue just in time. We play "good cop, bad cop" and sometimes this works to help Sasha calm down and to listen to reason. Fortunately, it worked and he was able to enjoy the rest of the picnic without allowing HOM to rear its ugly head. Sasha ended up distracting himself by playing games at the arcade and eating very little/lightly for the remainder of the picnic. I am convinced that his ability to distract himself from eating would not have happened if the KB did not intervene with stopping HOM from eating the cookie. As unpleasant as it was while it lasted, it was a necessary intervention and one that Sasha even thanked me for at the end of the picnic.
In reading more on hyperinsulinemia and insulin resistance, I am now wondering if they are almost synonymous with sugar addiction? If not the same phenomenon, at least, they are highly interrelated. The symptoms of hyperinsulinemia also very closely resemble many of the symptoms of Hypothalamic Obesity.
Here are two excellent and very readable articles on the topic:
http://www.diabetes.co.uk/hyperinsulinemia.html
http://www.holistichelp.net/insulin-resistance-symptoms.html
Sunday, July 31, 2016
Friday, July 29, 2016
29) Is my son an addict? Examining the role of sugar addiction
We are still not entirely sure of the effects of the oxytocin...as much as I would like to believe that the reduced appetite we observed in him was a genuine reflection of a truly reduced appetite and not due to extra food snuck on the side, I cannot verify it for certain. I told him that if HO Monster was tricking us by continuing to sneak food during the time it appeared he had a reduced appetite, I needed him to tell me. I even told him that if HO Monster was actually sneaking food, I didn't want to waste my time with oxytocin- that there may be other treatments to try... in truth, I wouldn't give up on oxytocin that easily but I wanted to see if he would give up his charade if I presented him with the option to quit and try something else. I have approached him on a few occasions and have used my very best detective and psychologist skills but I know that it is not easy to ascertain it from Sasha when he may have been "under the influence" of his evil twin, HO Monster.
For what it's worth, Sasha staunchly maintains his position that the oxytocin DID help him reduce his appetite for a period of time and that during this period of time (however long, we don't know), he did NOT engage in any extra food sneaking. He said that everything went awry when his appetite was triggered for chocolate, starting him on the vicious cycle of the wanting more, eating more, acquiring more, etc. Interestingly, he told me that while he was acquiring and eating chocolate in secret, he had little to no cravings to seek other foods. For example, he could have finished eating the food in his lunch or dinner or even tried to sneak other foods when he had the chance, but he said that he didn't have the desire to do so. Before oxytocin, Sasha would sneak any and all palatable food he could get including nuts, cheese, salami, peanut butter, etc. Could it be that the oxytocin was able to decrease his appetite for non-sugary food? Could this be because the other food was not as tempting or palatable to him as chocolate? What was so special about chocolate?
Well, to all of you chocoholics out there, you know why chocolate is so special! I am fond of chocolate too but I think that certain people have a particular passion for it that goes beyond fondness. In grad school I can recall learning about phenylethylamine, a chemical contained in chocolate that gives us the feeling of being in love- there is good reason why chocolate is often given to lovers on Valentine's Day! Chocolate also contains tryptophan, a precursor to serotonin, the well known neurotransmitter responsible for our feelings of well being. Besides having some of these alluring ingredients, chocolate of course tastes good and contains sugar and fat. Well, fat is allowed in Sasha's low carb food plan but it does NOT permit sugar. All of this has made me wonder if his narrow focus on chocolate may be an indication of sugar addiction.
First of all, is it possible to be a sugar addict? We often think of addiction as pertaining to substances like alcohol or cocaine but sugar...? Let's first look at the definition of addiction. The DSM describes addiction as a problematic pattern of use of an intoxicating substance leading to:
A) Clinically significant impairment or distress, as manifested by at least two of the following, occurring within a 12-month period-
1. The substance is often taken in larger amounts or over a longer period than was intended.
2. There is a persistent desire or unsuccessful effort to cut down or control use of the substance.
3. A great deal of time is spent in activities necessary to obtain the substance, use the substance, or recover from its effects.
4. Craving, or a strong desire or urge to use the substance.
5. Recurrent use of the substance resulting in a failure to fulfill major role obligations at work, school, or home.
6. Continued use of the substance despite having persistent or recurrent social or interpersonal problems caused or exacerbated by the effects of its use.
7. Important social, occupational, or recreational activities are given up or reduced because of use of the substance.
8. Recurrent use of the substance in situations in which it is physically hazardous.
9. Use of the substance is continued despite knowledge of having a persistent or recurrent physical or psychological problem that is likely to have been caused or exacerbated by the substance.
B) Tolerance, as defined by either of the following:
1. A need for markedly increased amounts of the substance to achieve intoxication or desired effect.
2. A markedly diminished effect with continued use of the same amount of the substance.
C) Withdrawal, as manifested by either of the following:
1. The characteristic withdrawal syndrome for that substance (as specified in the DSM- 5 for each substance).
2. The substance (or a closely related substance) is taken to relieve or avoid withdrawal symptoms.
For Sasha, sugar is not a benign substance. As a hyperinsulin secreter, his body produces very high levels of insulin in response to glucose in his body. His ingestion of carbs/sugars causes insulin resistance, putting him at high risk of developing Diabetes Mellitus 2. Sugar also causes him to have very high triglycerides and this puts him at risk for developing acute pancreatitis and other types metabolic and cardiac diseases. From what I have observed with the very large cache of chocolate, the persistent lying which has eroded our relationship with him, his risky behavior of eloping from the house in the wee hours of the morning without our knowing, weight gain and dangerous electrolyte imbalance, and the loss of time and quality of life due to the fatigue caused by steep insulin crashes... all of these make me think that he definitely has met the criteria under section A.
As for (B) building tolerance, I am unable to say for certain if he was consuming increasingly greater amounts of chocolate in order to attain the same "high" since I do not know how much he was consuming. I can only guess by his large supply that the more he ate, the more he felt he needed to eat. In regards to (C) withdrawal from sugar, the literature reports increased cravings and anxiety as observed in animal studies where rats are intermittently exposed to sugar and then deprived. These rats also exhibited signs of passivity in a physical activity of escape (swimming, climbing) compared to control group rats. Those rats who had intermittent exposure and then forced withdrawal (compared to control group rats with no exposure/withdrawal from sugar) were observed to choose floating behaviors more than their counterparts who engaged in more swimming and climbing behaviors. The authors concluded that the rats who were withdrawing from sugar showed signs of behavioral depression.
The authors (Avena et al.) of this review article sum up their findings about sugar addiction in their conclusion:
"From an evolutionary perspective, it is in the best interest of humans to have an inherent desire for food for survival. However, this desire may go awry, and certain people, including some obese and bulimic patients in particular, may develop an unhealthy dependence on palatable food that interferes with well-being. The concept of “food addiction” materialized in the diet industry on the basis of subjective reports, clinical accounts and case studies described in self-help books. The rise in obesity, coupled with the emergence of scientific findings of parallels between drugs of abuse and palatable foods has given credibility to this idea. The reviewed evidence supports the theory that, in some circumstances, intermittent access to sugar can lead to behavior and neurochemical changes that resemble the effects of a substance of abuse. According to the evidence in rats, intermittent access to sugar and chow is capable of producing a “dependency”. This was operationally defined by tests for bingeing, withdrawal, craving and cross-sensitization to amphetamine and alcohol. The correspondence to some people with binge eating disorder or bulimia is striking, but whether or not it is a good idea to call this a “food addiction” in people is both a scientific and societal question that has yet to be answered. What this review demonstrates is that rats with intermittent access to food and a sugar solution can show both a constellation of behaviors and parallel brain changes that are characteristic of rats that voluntarily self-administer addictive drugs. In the aggregrate, this is evidence that sugar can be addictive."
To read the full review article, please click on this link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2235907/
If I had to translate these animal study findings to Sasha, I would say that the tolerance was exhibited by his high chocolate consumption (presumably, increased consumption) and that his anxiety may have been exhibited by his irritable mood and arguments with me and his camp directors over the last few weeks. His withdrawal may been demonstrated by his increased fatigue and day time somnolence. Although we attributed his fatigue to his needing more thyroid or corticosteroids, we can see now that his large chocolate consumption was probably also playing an important role in his excessive fatigue!
It is hard to know for certain the exact role of the chocolate in relationship to his oxytocin. I can only surmise that the oxytocin has been effective to a degree in reducing his appetite for the time he was not binging on chocolate and other sugary foods (if we believe Sasha's self-reports). It is also apparent to me that oxytocin has not been effective in eliminating his strong cravings for sugar/chocolate. It is also likely that the sugar contained in the chocolate acts as a powerfully seductive substance that he resists with extreme difficulty (at best) or is unable to resist once exposed (at worst).
For now, we will take heed of HO Monster's favorite food and try to keep it away from him as best we can... Sasha has expressed appreciation for the increased security in our home and we will be doing intermittent searches of his room, backpack, pockets, and other possible hiding places. The Kitchen Bitch will likely be making a reappearance but it cannot be helped, for now. All I know is that she wants to send a very loud and clear message to HO Monster:
"Stop messing with Sasha and the oxytocin experiment or you will face the wrath of the Kitchen Bitch!"
For what it's worth, Sasha staunchly maintains his position that the oxytocin DID help him reduce his appetite for a period of time and that during this period of time (however long, we don't know), he did NOT engage in any extra food sneaking. He said that everything went awry when his appetite was triggered for chocolate, starting him on the vicious cycle of the wanting more, eating more, acquiring more, etc. Interestingly, he told me that while he was acquiring and eating chocolate in secret, he had little to no cravings to seek other foods. For example, he could have finished eating the food in his lunch or dinner or even tried to sneak other foods when he had the chance, but he said that he didn't have the desire to do so. Before oxytocin, Sasha would sneak any and all palatable food he could get including nuts, cheese, salami, peanut butter, etc. Could it be that the oxytocin was able to decrease his appetite for non-sugary food? Could this be because the other food was not as tempting or palatable to him as chocolate? What was so special about chocolate?
Well, to all of you chocoholics out there, you know why chocolate is so special! I am fond of chocolate too but I think that certain people have a particular passion for it that goes beyond fondness. In grad school I can recall learning about phenylethylamine, a chemical contained in chocolate that gives us the feeling of being in love- there is good reason why chocolate is often given to lovers on Valentine's Day! Chocolate also contains tryptophan, a precursor to serotonin, the well known neurotransmitter responsible for our feelings of well being. Besides having some of these alluring ingredients, chocolate of course tastes good and contains sugar and fat. Well, fat is allowed in Sasha's low carb food plan but it does NOT permit sugar. All of this has made me wonder if his narrow focus on chocolate may be an indication of sugar addiction.
First of all, is it possible to be a sugar addict? We often think of addiction as pertaining to substances like alcohol or cocaine but sugar...? Let's first look at the definition of addiction. The DSM describes addiction as a problematic pattern of use of an intoxicating substance leading to:
A) Clinically significant impairment or distress, as manifested by at least two of the following, occurring within a 12-month period-
1. The substance is often taken in larger amounts or over a longer period than was intended.
2. There is a persistent desire or unsuccessful effort to cut down or control use of the substance.
3. A great deal of time is spent in activities necessary to obtain the substance, use the substance, or recover from its effects.
4. Craving, or a strong desire or urge to use the substance.
5. Recurrent use of the substance resulting in a failure to fulfill major role obligations at work, school, or home.
6. Continued use of the substance despite having persistent or recurrent social or interpersonal problems caused or exacerbated by the effects of its use.
7. Important social, occupational, or recreational activities are given up or reduced because of use of the substance.
8. Recurrent use of the substance in situations in which it is physically hazardous.
9. Use of the substance is continued despite knowledge of having a persistent or recurrent physical or psychological problem that is likely to have been caused or exacerbated by the substance.
B) Tolerance, as defined by either of the following:
1. A need for markedly increased amounts of the substance to achieve intoxication or desired effect.
2. A markedly diminished effect with continued use of the same amount of the substance.
C) Withdrawal, as manifested by either of the following:
1. The characteristic withdrawal syndrome for that substance (as specified in the DSM- 5 for each substance).
2. The substance (or a closely related substance) is taken to relieve or avoid withdrawal symptoms.
For Sasha, sugar is not a benign substance. As a hyperinsulin secreter, his body produces very high levels of insulin in response to glucose in his body. His ingestion of carbs/sugars causes insulin resistance, putting him at high risk of developing Diabetes Mellitus 2. Sugar also causes him to have very high triglycerides and this puts him at risk for developing acute pancreatitis and other types metabolic and cardiac diseases. From what I have observed with the very large cache of chocolate, the persistent lying which has eroded our relationship with him, his risky behavior of eloping from the house in the wee hours of the morning without our knowing, weight gain and dangerous electrolyte imbalance, and the loss of time and quality of life due to the fatigue caused by steep insulin crashes... all of these make me think that he definitely has met the criteria under section A.
As for (B) building tolerance, I am unable to say for certain if he was consuming increasingly greater amounts of chocolate in order to attain the same "high" since I do not know how much he was consuming. I can only guess by his large supply that the more he ate, the more he felt he needed to eat. In regards to (C) withdrawal from sugar, the literature reports increased cravings and anxiety as observed in animal studies where rats are intermittently exposed to sugar and then deprived. These rats also exhibited signs of passivity in a physical activity of escape (swimming, climbing) compared to control group rats. Those rats who had intermittent exposure and then forced withdrawal (compared to control group rats with no exposure/withdrawal from sugar) were observed to choose floating behaviors more than their counterparts who engaged in more swimming and climbing behaviors. The authors concluded that the rats who were withdrawing from sugar showed signs of behavioral depression.
The authors (Avena et al.) of this review article sum up their findings about sugar addiction in their conclusion:
"From an evolutionary perspective, it is in the best interest of humans to have an inherent desire for food for survival. However, this desire may go awry, and certain people, including some obese and bulimic patients in particular, may develop an unhealthy dependence on palatable food that interferes with well-being. The concept of “food addiction” materialized in the diet industry on the basis of subjective reports, clinical accounts and case studies described in self-help books. The rise in obesity, coupled with the emergence of scientific findings of parallels between drugs of abuse and palatable foods has given credibility to this idea. The reviewed evidence supports the theory that, in some circumstances, intermittent access to sugar can lead to behavior and neurochemical changes that resemble the effects of a substance of abuse. According to the evidence in rats, intermittent access to sugar and chow is capable of producing a “dependency”. This was operationally defined by tests for bingeing, withdrawal, craving and cross-sensitization to amphetamine and alcohol. The correspondence to some people with binge eating disorder or bulimia is striking, but whether or not it is a good idea to call this a “food addiction” in people is both a scientific and societal question that has yet to be answered. What this review demonstrates is that rats with intermittent access to food and a sugar solution can show both a constellation of behaviors and parallel brain changes that are characteristic of rats that voluntarily self-administer addictive drugs. In the aggregrate, this is evidence that sugar can be addictive."
To read the full review article, please click on this link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2235907/
If I had to translate these animal study findings to Sasha, I would say that the tolerance was exhibited by his high chocolate consumption (presumably, increased consumption) and that his anxiety may have been exhibited by his irritable mood and arguments with me and his camp directors over the last few weeks. His withdrawal may been demonstrated by his increased fatigue and day time somnolence. Although we attributed his fatigue to his needing more thyroid or corticosteroids, we can see now that his large chocolate consumption was probably also playing an important role in his excessive fatigue!
It is hard to know for certain the exact role of the chocolate in relationship to his oxytocin. I can only surmise that the oxytocin has been effective to a degree in reducing his appetite for the time he was not binging on chocolate and other sugary foods (if we believe Sasha's self-reports). It is also apparent to me that oxytocin has not been effective in eliminating his strong cravings for sugar/chocolate. It is also likely that the sugar contained in the chocolate acts as a powerfully seductive substance that he resists with extreme difficulty (at best) or is unable to resist once exposed (at worst).
For now, we will take heed of HO Monster's favorite food and try to keep it away from him as best we can... Sasha has expressed appreciation for the increased security in our home and we will be doing intermittent searches of his room, backpack, pockets, and other possible hiding places. The Kitchen Bitch will likely be making a reappearance but it cannot be helped, for now. All I know is that she wants to send a very loud and clear message to HO Monster:
"Stop messing with Sasha and the oxytocin experiment or you will face the wrath of the Kitchen Bitch!"
Wednesday, July 27, 2016
28) Allied together against the HO Monster
Yesterday afternoon, my husband confronted Sasha about his cache of chocolate. As predicted, he denied that he had taken or eaten any chocolate. However, when told of the known chocolate and their hiding places, he had to admit that he had eaten the chocolate. He ended up confessing that he had snuck out of the house in the early morning hours to buy the chocolate. He then melted down into a puddle of shame and self loathing and retreated to his room. These outbursts, although very upsetting, are not unusual- unfortunately, we are used to these meltdowns because they occur each and every time he is confronted about food sneaking. In his typical fashion, he stayed in his room to stew and lick his wounds (and to probably finish off the rest of his hidden chocolate)- after his hour-long retreat, he came out and had dinner. He was sober and quiet but appeared much less distressed. We decided to leave the topic alone for the evening and to revisit it the next day. In order to secure the house from any future elopements, my husband installed alarms on all the doors in the house.
In the morning, I calmly and very matter-of-factly told Sasha that I wanted to talk with him about the chocolate he had acquired and that I was not at all interested in punishing him or shaming him for the behavior. I told him that I understood very well that it was not Sasha who acquired the chocolate but that it was rather the HO Monster. I explained to Sasha that there are in fact five beings living in our home- his dad, mom, sister, himself and HO Monster. I described this HO Monster as being like his evil twin...it tries to overpower him by seducing him into finding and eating foods that are harmful to him (carbs/sugars)... it needs to be conquered by us in order for Sasha to be happy and healthy... WE need to become allies to destroy this monster. I asked Sasha if he understood the importance of becoming partners in the fight against HO Monster. Sasha appeared thoughtful as I described that he is the victim to the monster and how he needs to find the strength to fight the monster off before it destroys him. I also told him that our biggest weapon against the monster would be The Truth- that The Truth, however undesirable, inconvenient, or confusing, would help us the most in conquering this monster.
Now, I know HO Monster is a liar living inside of him and that there are several reasons to see Sasha's reports as COMPLETELY UNRELIABLE. The monster's agenda (to acquire food, especially sweets), Sasha's desire to not disappoint me, and his poor memory all add up to give me little reason to believe anything he reports to me on the topic of food and food sneaking. I know this. I know to take what Sasha says with a big ol' chunk o' salt. That said, I still wanted to see if I could piece together the sequence of events to help me understand what happened with his appetite and cravings for chocolate. I thought that it might be easier for him to reveal the truth to me since we were talking about events in the past after his big secret had been revealed. Call me a gullible fool, I still needed to ask... use your own judgement about the credibility of what I am about to reveal regarding Sasha's reports.
I felt like a detective as I tried to help him remember the sequence of events. Based on what I learned from him and other observed clues, my best guess is that his cravings for more sweets began the weekend we went away to the family camp (July 8). There, they served all meals family style that included many foods that are normally prohibited in Sasha's food plan. It was very difficult for us to keep the food away from him in this environment so unfortunately, he did eat carbs like bread, potatoes, a brownie and cookie. Sasha admitted to me that during this weekend, he started to think about food a lot. His thoughts reverted back to how he felt before oxytocin took effect- he found himself being more preoccupied by food and after tasting the sugary desserts, he wondered how he could get more. After this weekend, Sasha shared that he became obsessed with getting more sweets. He doesn't recall the exact date he snuck to the store the first time but reports that he went twice and that these visits were done in the last two weeks or so. He admitted that he snuck out in the very early morning hours while we were asleep (4-5 AM) and walked the 1/3 mile from our house to the 24-hour Safeway to buy the chocolate candies.
I thanked Sasha for telling me about the monster's behaviors and remarked how clever, daring, and ambitious this monster is. I told Sasha that we would need to be even more powerful in order to conquer this beast. Then I held my breath and asked him the question I was most afraid to ask:
"During the couple of weeks (between June 24 and July 8) when we noticed your decreased appetite, was HO monster sneaking in extra food or sweets that we did not know about?"
Without hesitation, he replied "no." I gave him several outs and told him that I would not be upset or angry to learn that he had in fact taken extra food during these weeks. He stuck with his report that during that time, he was in fact noticing a reduced appetite and a lessening obsession about food.
Dare I breathe a sigh of relief? I want so badly to believe him that what we thought was a reduction of appetite during that time was in fact TRUE. I really don't know if it's true. When I discoveerd that he was continuing to sneak food during his trial with oxytocin, I had been thinking that the oxytocin experiment was a failure. However, as advised by Dr. Miller, I need to be more patient with this experiment. She explained to me that these victims of HO are programmed to seek food and that it takes a long time to break the habit of seeking food as a survival mechanism. I can certainly understand the need to continue to hoard food under these circumstances. With the additional piece of sugar addiction, I can also see that it is possible his eating sugar created a vicious cycle to crave more sugar...
With the help of increased food security and a healthy dose of caution and skepticism, I will soldier on with the oxytocin experiment.
Monday, July 25, 2016
27) Getting a realistic grip on the nature of the beast that is HO
Ever since I found the chocolate stash on Friday, I have been thinking about its implications for the oxytocin experiment and for his overall metabolic health.
My first reaction was one of betrayal and disappointment- how could he lie about eating chocolate behind my back when I had asked him and given him MANY chances to be truthful with me (without risk of punishment) about any extra food consumed? How many times had I explained to him that any and all incidents of extra food eaten or not eaten, weight gained or lost, changes in mood, behavior, etc. would simply be treated as data for the experiment (and not as a means to judge his character or goodness/badness as my son)? How many times had I tried to impress upon him that having incorrect information (falsified or omitted) could be medically unsafe for him since some of his medications are adjusted based on his observed and self-reported symptoms/behaviors? In fact, I expressed these things to him every day, several times a day, and received his nods of understanding and agreement to be transparent in communicating these important things with me. Discovering the chocolate frustrated me as the "P.I." of the experiment but also, admittedly, angered me as his mother- after all, I have worked very hard to find a way to provide this off-label hormone to him in order to help him and his secretive chocolate eating has felt like a disrespectful insult to my efforts to help him with the most painful problem in his life.
After talking and writing out my feelings and receiving feedback from others, my second reaction was an "AHA!" to the nature of his problem and of this experiment. I can see now that my expectations of him and this experiment were unrealistic for a couple of reasons:
1) Even without actual risk of punishment and even if he believed my sincerity, he still has little to no motivation to be truthful because it would risk his having to reveal to me that he had a secret cache of chocolate. If he wanted to keep that chocolate, then why would he tell me that he had eaten it? He knew that it would be at the risk of my asking him if he still had it and that perhaps I would ask him to give it up.
2) Just like I wouldn't expect a wolf to behave like anything other than a wolf, why should I expect Sasha to behave any differently? Having an intense appetite, seeking food (especially carbohydrates) and lying about food are all part of the syndrome of HO. I can't study HO or do an experiment on a subject with HO if I don't take these factors (symptoms) into account. To treat Sasha like a person who is capable of revealing the truth about his appetite or food intake is like expecting an alcoholic to be able to monitor his alcohol intake and make accurate reports on his daily alcohol consumption while working as a bartender! Crazy, right?
If I had properly anticipated the two insights listed above, I would have never even relied upon Sasha's self-reports as factors in the experiment! His reports, feelings, and thoughts should never have been even taken into consideration and in fact, I now see that his reports are completely unreliable! The ONLY meaningful data are objectively observable data (which I will document in another posting). Without intending to be judgmental on any moral grounds, I know that my son's syndrome of HO makes him a liar when it comes down to issues pertaining to food and that he is incapable of reporting accurately about what he eats, how much he eats, etc. Furthermore, his relationship to the experimenter (me) confounds the accuracy of the reports even more since I am his mother and since he very likely does not want to disappoint me by having to present to me any unfavorable data (e.g. eating chocolate on the side).
The other important factor concerns experimental controls: securing his environment to keep it safe and secure from all food may not be possible to do. Sure, we can try to search his room and pockets and backpack on a daily basis and we can even put an alarm on our house... but we aren't' with him 24/7 and we can't guarantee that he hasn't found another source of candy outside of the house. When he is at school or camp, it doesn't take much for someone to look the other way and for Sasha to find a way into someone's backpack or lunch bag... we are not in the business of operating a maximum security prison. We are just a regular family living in a home, going to work, and sending our kids to public school.
Another big question I have is about the timing of this candy collection...how long has he been doing it? When did it start, before or after oxytocin? If it started before oxytocin, has it been better or worse since starting oxytocin? If it started after oxytocin, is this what explains what appeared to be his lowered appetite (filling up on chocolate before meals)?
My original goals in starting this oxytocin experiment were as follows:
1. To see if oxytocin would help reduce Sasha's intense hunger and food obsession
2. To see if oxytocin would help to reduce incidences of food seeking/stealing
3. To see if oxytocin would improve his social motivation (and increase his interest in having social interactions/friendships with peers)
I am tempted to say that oxytocin is failing to help my son with his appetite and food seeking so far but I can't quite say that yet... one mom remarked to me that the oxytocin must be working because we found signs of his ability to pace himself. In other words, he didn't gorge on the entire supply of chocolate in one sitting! Her child who has the same condition would have eaten the entire supply of chocolate at once so surely this was a sign of improvement? Another mom remarked that even "normal people" (people without HO) have their secret stashes of treats and why should Sasha be any different especially if he was prohibited from enjoying these treats in a legitimate way? After all, can't the prohibition of chocolate intensify the psychological drive to eat it even more? Could we regard his chocolate eating as a separate (but not entirely unrelated) issue, one of Chocoholism (that he truly inherited from his father?!)
Again, I am left with more questions than answers but as I move forward, I know that I will need to manage the lack of controls (food security) and rethink the dependent variables of this experiment... what am I exactly measuring that will give me reliable data to answer my research questions (numbers 1-3) listed above??? I will think about this and write about this in my next posting. Stay tuned.
My first reaction was one of betrayal and disappointment- how could he lie about eating chocolate behind my back when I had asked him and given him MANY chances to be truthful with me (without risk of punishment) about any extra food consumed? How many times had I explained to him that any and all incidents of extra food eaten or not eaten, weight gained or lost, changes in mood, behavior, etc. would simply be treated as data for the experiment (and not as a means to judge his character or goodness/badness as my son)? How many times had I tried to impress upon him that having incorrect information (falsified or omitted) could be medically unsafe for him since some of his medications are adjusted based on his observed and self-reported symptoms/behaviors? In fact, I expressed these things to him every day, several times a day, and received his nods of understanding and agreement to be transparent in communicating these important things with me. Discovering the chocolate frustrated me as the "P.I." of the experiment but also, admittedly, angered me as his mother- after all, I have worked very hard to find a way to provide this off-label hormone to him in order to help him and his secretive chocolate eating has felt like a disrespectful insult to my efforts to help him with the most painful problem in his life.
After talking and writing out my feelings and receiving feedback from others, my second reaction was an "AHA!" to the nature of his problem and of this experiment. I can see now that my expectations of him and this experiment were unrealistic for a couple of reasons:
1) Even without actual risk of punishment and even if he believed my sincerity, he still has little to no motivation to be truthful because it would risk his having to reveal to me that he had a secret cache of chocolate. If he wanted to keep that chocolate, then why would he tell me that he had eaten it? He knew that it would be at the risk of my asking him if he still had it and that perhaps I would ask him to give it up.
2) Just like I wouldn't expect a wolf to behave like anything other than a wolf, why should I expect Sasha to behave any differently? Having an intense appetite, seeking food (especially carbohydrates) and lying about food are all part of the syndrome of HO. I can't study HO or do an experiment on a subject with HO if I don't take these factors (symptoms) into account. To treat Sasha like a person who is capable of revealing the truth about his appetite or food intake is like expecting an alcoholic to be able to monitor his alcohol intake and make accurate reports on his daily alcohol consumption while working as a bartender! Crazy, right?
If I had properly anticipated the two insights listed above, I would have never even relied upon Sasha's self-reports as factors in the experiment! His reports, feelings, and thoughts should never have been even taken into consideration and in fact, I now see that his reports are completely unreliable! The ONLY meaningful data are objectively observable data (which I will document in another posting). Without intending to be judgmental on any moral grounds, I know that my son's syndrome of HO makes him a liar when it comes down to issues pertaining to food and that he is incapable of reporting accurately about what he eats, how much he eats, etc. Furthermore, his relationship to the experimenter (me) confounds the accuracy of the reports even more since I am his mother and since he very likely does not want to disappoint me by having to present to me any unfavorable data (e.g. eating chocolate on the side).
The other important factor concerns experimental controls: securing his environment to keep it safe and secure from all food may not be possible to do. Sure, we can try to search his room and pockets and backpack on a daily basis and we can even put an alarm on our house... but we aren't' with him 24/7 and we can't guarantee that he hasn't found another source of candy outside of the house. When he is at school or camp, it doesn't take much for someone to look the other way and for Sasha to find a way into someone's backpack or lunch bag... we are not in the business of operating a maximum security prison. We are just a regular family living in a home, going to work, and sending our kids to public school.
Another big question I have is about the timing of this candy collection...how long has he been doing it? When did it start, before or after oxytocin? If it started before oxytocin, has it been better or worse since starting oxytocin? If it started after oxytocin, is this what explains what appeared to be his lowered appetite (filling up on chocolate before meals)?
My original goals in starting this oxytocin experiment were as follows:
1. To see if oxytocin would help reduce Sasha's intense hunger and food obsession
2. To see if oxytocin would help to reduce incidences of food seeking/stealing
3. To see if oxytocin would improve his social motivation (and increase his interest in having social interactions/friendships with peers)
I am tempted to say that oxytocin is failing to help my son with his appetite and food seeking so far but I can't quite say that yet... one mom remarked to me that the oxytocin must be working because we found signs of his ability to pace himself. In other words, he didn't gorge on the entire supply of chocolate in one sitting! Her child who has the same condition would have eaten the entire supply of chocolate at once so surely this was a sign of improvement? Another mom remarked that even "normal people" (people without HO) have their secret stashes of treats and why should Sasha be any different especially if he was prohibited from enjoying these treats in a legitimate way? After all, can't the prohibition of chocolate intensify the psychological drive to eat it even more? Could we regard his chocolate eating as a separate (but not entirely unrelated) issue, one of Chocoholism (that he truly inherited from his father?!)
Again, I am left with more questions than answers but as I move forward, I know that I will need to manage the lack of controls (food security) and rethink the dependent variables of this experiment... what am I exactly measuring that will give me reliable data to answer my research questions (numbers 1-3) listed above??? I will think about this and write about this in my next posting. Stay tuned.
Saturday, July 23, 2016
26) More "Mind-Body" Mind Benders
For those of you who have also observed the blurring lines between the mind and body, I am attaching a few more interesting pieces for you to ponder over that explore more on this topic in the psychiatry world where I work.
This short audio segment discusses an experimental use of TMS or Transcranial Magnetic Stimulation on a woman with autism. This demonstrates how a brain stimulation experiment changes the way a woman communicates and perceives her social environment.
http://www.npr.org/2016/07/07/485138695/invisibilia-an-experiment-helps-one-woman-see-the-world-in-a-new-way
This article describes how the mania of bipolar disorder can actually be induced by antibiotics. This is no joke. This actually happened to a close friend of mine:
This short audio segment discusses an experimental use of TMS or Transcranial Magnetic Stimulation on a woman with autism. This demonstrates how a brain stimulation experiment changes the way a woman communicates and perceives her social environment.
http://www.npr.org/2016/07/07/485138695/invisibilia-an-experiment-helps-one-woman-see-the-world-in-a-new-way
This article describes how the mania of bipolar disorder can actually be induced by antibiotics. This is no joke. This actually happened to a close friend of mine:
Infection, antibiotic use linked to manic episodes in psychiatric patients
BALTIMORE, July 20 (UPI) -- Changes to the collection of bacteria in the gut have been linked to a range of health effects, and now researchers think bacterial infections or antibiotic treatment for infections could play a role in some psychiatric episodes.
While not saying one causes the other, researchers at Johns Hopkins University report a link to changes in the microbiome due to an infection or antibiotic treatment could play a role in psychiatric symptoms and disorders.
Previous studies have shown changes to the microbiome can alter the behavior of animals, with the new research suggesting the link between the brain and gut is significant enough that changes to one affect the other.
For the study, published in the journal Bipolar Disorders, the researchers reviewed medical records for 368 patients admitted to the Sheppard Pratt psychiatric hospital. Of the participants, 234 were hospitalized for mania, 101 were hospitalized for bipolar disorder, 70 for depression and 197 for schizophrenia, all of whom were compared to 555 healthy patients.
Among patients hospitalized for mania and overactivity linked to bipolar disorder, 7.7 percent were being treated with antibiotics, compared to 1.3 percent of controls. Of other conditions, 3 percent of those hospitalized for schizophrenia, 4 percent for bipolar depression and 2.9 percent of those with depression were also on antibiotics when hospitalized for heightened symptoms.
While researchers say are unsure of the link, either the potential for inflammation from an infection or gut biome changes from antibiotics, or both, may be playing a role in heightened symptoms of psychiatric disorders.
If an actual link is established, they say, more attention to healthcare -- or even just care without use of antibiotics -- may be necessary to better manage psychiatric conditions.
"More research is needed, but ours suggests that if we can prevent infections and minimize antibiotic treatment in people with mental illness, then we might be able to prevent the occurrence of manic episodes," Dr. Robert Yolken, a professor of neurovirology in pediatrics at the Johns Hopkins University School of Medicine, said in a press release. "This means we should focus on good-quality health care and infection prevention methods for this susceptible population and pay extra attention to such things as flu shots, safe sex practices, and urinary tract infections in female patients."
And last but not least, there is a very effective and efficient evidenced-based treatment called Eye Movement Desensitization and Reprocessing (EMDR) that I have been using on my own patients for the last 23 years. It sounds completely hokey and bizarre but it really works to help people quickly and deeply resolve trauma-based problems by using bilateral stimulation to help process traumatic memories. I recommend it to anyone who is suffering from Post-Traumatic Stress Disorder or or any problem rooted in trauma.
These are but a few examples of how our physiology affects our mind and behavior. Maybe one day we will have a better understanding of this amazing thing we call the mind-body connection...in the meantime, we can continue to study, learn and marvel at the mystery!
Friday, July 22, 2016
25) Exhaling a bit (for now)... learning lessons from today
What a day! Well, they say that all is well that ends well. Sasha has gone to bed and I must admit that the afternoon and evening went remarkably well. But before I get too excited about anything, let me remind myself of what I learned today.
In my professional role as a clinical psychologist, I am very keen to teach the wise concept of living in the now and practicing non-attachment. We never really know what is going to happen next. We are not in control of other people or our circumstances. All we can do is to use our education, instincts, experiences, and personal beliefs/values to help us make the best choices we have available to us in the moment and adapt the best we can to the adversities of life. I am a firm believer in the Serenity Prayer: God, grant me the serenity to accept the things I cannot change, the courage to change the things that I can, and the wisdom to know the difference. The wisdom of this prayer along with my awareness of the importance of non-attachment has been seared into my mind after today's turbulent events.
After we came home from camp, Sasha had a guest, a boy named L who met him (and me) for the first time. L's father is a new friend of Sasha's dad and their entire family was planning to join us for dinner at our house. Sasha and L hit it off right away and had a great time playing with their Magic the Gathering cards. While they were playing, I was keeping a low profile and writing (posting #24) to you all. As you may recall, he delayed in asking for a snack (to my relief) and only asked for a snack at 5:20 PM- quite late considering he usually demands a snack by 4 PM on average. I got the boys a snack of pistachios and Nori seaweed which they happily ate together. It was downright surreal to overhear how normal Sasha was acting- for a kid who almost NEVER has playdates or friends over, he was a natural- like he and L were best buds! By 5:35, they were done with their snack and my husband came home. We started to make dinner. I was super edgy about bringing out any food because I didn't want to distract Sasha from his guest... I was even a Kitchen Bitch to my poor 11 year old daughter because she also had a friend over and when she asked, "Mom, may J and I do some baking", I snapped "no!" as if she were asking me if she could get her tongue pierced. I was so stressed about the food issue I didn't want ANY food cues to disrupt what I was perceiving as a smooth social interaction between Sasha and his new friend.
To my utter shock, while his dad and I prepared dinner (salad bar and grilled chicken and sausages), Sasha continued playing with L. Even after we put the appetizers out on the table (veggies and dip and parsnip chips), he continued to ignore the food to play games and by now he was playing Parcheesi with L, his sister and Sasha's sister outside on the deck... WHAT? In fact, I only saw Sasha come into the house ONCE the entire time before dinner was served at 7:15 PM. This was another one of those firsts because historically, we couldn't peel him away from the appetizers at our dinner parties and we also never saw him choosing to socialize with a group of kids when food was only 8 feet away in the next room...!
At dinner, he served himself a generous plate of salad but only ate half his salad- said he was full. Then we took a walk together to the frozen yogurt shop in our neighborhood and he presented us with another HEFY (see below)...
Getting back to my lessons from today... in retrospect, I think I have been too attached to the idea of an easy fix. Oxytocin is not a magic bullet. It is not a miracle (although it does feel like one sometimes) that is going to solve ALL of his HO and hyperphagia illls. I can accept that there WILL be bumps in the road. We will have good days. We will also have bad days. Having a good day doesn't meant that the next day will be good and having a bad day doesn't mean the next day will be bad. There will be problems the oxytocin can't fix (like his chocoholism or his lying). There may not be a solution to the problems for which we seek solutions. All I can do is try. I will fall and stumble again and all I can do is pick myself up and do it again. I can only hope that I will be able to accept what I cannot change with grace. And when I don't know what else to do, I can always vent to the wonderful people who read this blog, who understand what it is like to be in my shoes.
We are all in this together and although it is hell sometimes, it sure is nice to know we aren't alone.
Thank you for reading this and for being my moral support through this journey we call Life.
24) Roller coaster ride from hell
Forgive the profanity in the title. I am going crazy with frustration AND confusion at the moment.
First of all, Sasha had a pretty good day at camp- I'd give him a B overall for his behavior. He brought food to share with the camp (veggies, homemade hummus dips, cheese and low carb chocolate macaroons). He was happy to share the food with the campers and counselors and was in a good mood. Unfortunately, I underestimated the food and there wasn't enough for the afternoon snack so the director had to take out his usual supply of snack which was the crackers and watermelon. Sasha ended up trying to convince him to let him have some of the cracker snacks but the director held firm- he had a mini meltdown but the director used a lighthearted attitude and was able to cajole Sasha out of going into a darker mood. He then asked me by text if he could give Sasha some watermelon and I said it was fine. Sasha ended up eating 1.5 pieces which was totally reasonable. I was glad that his food intake today was reasonable and moderate but less glad that he tried to argue his way into convincing the director to give him food he wasn't supposed to eat. Luckily, there were no meltdowns today and the day ended well for Sasha.
Meanwhile... I was at home today and decided to do some snooping and found a pretty good sized cache of chocolate bars and empty wrappers in his drawer. Grrrrrrrr.... as you can imagine, I was livid. I felt unspeakable anger and demoralization. I will let you imagine what I felt in discovering the hidden chocolate as it impacts the oxytocin experiment, never mind his weight, fatigue and all the complex hormones that are implicated with these symptoms. I wondered to myself, why the hell am I working so f-ing hard to help my son if he was going to sabotage himself and this opportunity for a solution to his worst problems?
After some very helpful venting to the PWS Facebook community (THANK YOU!!!!!!!!!), I took in the very helpful counsel and told myself that this was the nature of the beast and that the beast is still alive and well despite whatever the oxytocin was doing (or not doing). I have even received some funny (not ha ha funny, but the other kind of funny) compliments like, "wow- at least he was capable of hoarding it and saving it for later- my kid would have eaten the entire stash in one sitting!" So- I decided that I would play it cool. I removed the remaining chocolate bars from the wrappers and confiscated them, leaving the empty wrappers behind in the drawer. I took pictures to show his dad. I told myself that I would just carry on as usual with no mention to him about the contraband chocolate. After all, what is he going to do about it? Tell me that I raided his chocolate cache? Ha!
I picked the kids up from camp today and didn't say a word. The afternoon is going surprisingly well. We are entertaining new friends tonight for dinner and the boy in the family was got dropped off to have a playdate with Sasha this afternoon At this moment as I am writing this, Sasha and this boy (L) have been playing with their Magic the Gathering cards for the last HOUR! First of all, this might be the very first social interaction he has had with another kid his age in our home in a very long time...! What's more- Sasha HAS NOT ASKED FOR A SNACK ALL AFTERNOON!!!!!! He appears to be thoroughly entertained with this social interaction and has forgotten about food- or something! I am just hanging out here in another room and keeping a low profile- any second now, he will probably ask for a snack but I am pretty thrilled that it is now 5:10 PM and he has not had anything to eat (as far as I know) since his afternoon snack at 2 PM when he ate the 1.5 pieces of watermelon.
Do you see the rollercoaster effect and why I am so confused?????? What do you make of this?
Your thoughts, reactions and comments are appreciated! Thanks!
First of all, Sasha had a pretty good day at camp- I'd give him a B overall for his behavior. He brought food to share with the camp (veggies, homemade hummus dips, cheese and low carb chocolate macaroons). He was happy to share the food with the campers and counselors and was in a good mood. Unfortunately, I underestimated the food and there wasn't enough for the afternoon snack so the director had to take out his usual supply of snack which was the crackers and watermelon. Sasha ended up trying to convince him to let him have some of the cracker snacks but the director held firm- he had a mini meltdown but the director used a lighthearted attitude and was able to cajole Sasha out of going into a darker mood. He then asked me by text if he could give Sasha some watermelon and I said it was fine. Sasha ended up eating 1.5 pieces which was totally reasonable. I was glad that his food intake today was reasonable and moderate but less glad that he tried to argue his way into convincing the director to give him food he wasn't supposed to eat. Luckily, there were no meltdowns today and the day ended well for Sasha.
Meanwhile... I was at home today and decided to do some snooping and found a pretty good sized cache of chocolate bars and empty wrappers in his drawer. Grrrrrrrr.... as you can imagine, I was livid. I felt unspeakable anger and demoralization. I will let you imagine what I felt in discovering the hidden chocolate as it impacts the oxytocin experiment, never mind his weight, fatigue and all the complex hormones that are implicated with these symptoms. I wondered to myself, why the hell am I working so f-ing hard to help my son if he was going to sabotage himself and this opportunity for a solution to his worst problems?
After some very helpful venting to the PWS Facebook community (THANK YOU!!!!!!!!!), I took in the very helpful counsel and told myself that this was the nature of the beast and that the beast is still alive and well despite whatever the oxytocin was doing (or not doing). I have even received some funny (not ha ha funny, but the other kind of funny) compliments like, "wow- at least he was capable of hoarding it and saving it for later- my kid would have eaten the entire stash in one sitting!" So- I decided that I would play it cool. I removed the remaining chocolate bars from the wrappers and confiscated them, leaving the empty wrappers behind in the drawer. I took pictures to show his dad. I told myself that I would just carry on as usual with no mention to him about the contraband chocolate. After all, what is he going to do about it? Tell me that I raided his chocolate cache? Ha!
I picked the kids up from camp today and didn't say a word. The afternoon is going surprisingly well. We are entertaining new friends tonight for dinner and the boy in the family was got dropped off to have a playdate with Sasha this afternoon At this moment as I am writing this, Sasha and this boy (L) have been playing with their Magic the Gathering cards for the last HOUR! First of all, this might be the very first social interaction he has had with another kid his age in our home in a very long time...! What's more- Sasha HAS NOT ASKED FOR A SNACK ALL AFTERNOON!!!!!! He appears to be thoroughly entertained with this social interaction and has forgotten about food- or something! I am just hanging out here in another room and keeping a low profile- any second now, he will probably ask for a snack but I am pretty thrilled that it is now 5:10 PM and he has not had anything to eat (as far as I know) since his afternoon snack at 2 PM when he ate the 1.5 pieces of watermelon.
Do you see the rollercoaster effect and why I am so confused?????? What do you make of this?
Your thoughts, reactions and comments are appreciated! Thanks!
Thursday, July 21, 2016
23) Follow-up from Tuesday- two steps backwards, baby steps forward...?
On Tuesday afternoon, we gave Sasha an extra spray of oxytocin because he was exhibiting his pre-oxytocin behaviors and we believed that perhaps the spray was not properly absorbed at his last dose on Monday. Since our observations of Sasha's apparent regression on Tuesday, it is an understatement to say that we have been anxious and on edge as we observe and try to make sense of his current behaviors.
Yesterday his camp director told me that he was in a very good mood and very social with other campers and I thought, oh good- the oxytocin must be putting him in a good mood and making him feel social with his peers! He ended up not eating much of his lunch (typical post-oxytocin behavior) but he did eat a lot of popcorn that was served for snack at the camp : ( For dinner, he ate about two thirds of his meal and accepted a small peach for dessert without any fuss. For breakfast this morning, he made eggs and a piece of toast and passed up the opportunity to eat extra eggs that were left in the pan, saying he wasn't hungry any longer. Seeing him pass up food was a relief to me.
I learned from Sasha and his sister that the camp served snack which was always crackers, popcorn and fruit. He admitted that he had been eating the popcorn snack and then feeling somewhat tired during the day. Due to the fact that he is a hyperinsulin secreter, I wanted to ascertain if the popcorn was causing the extra fatigue or if he still needed tweaking with his hydrocortisone and thyroid medications. I had a discussion with Sasha that I wanted him to avoid the high carb snacks at camp because I wanted to see if avoiding the carbs would improve his energy throughout the day. He agreed with me (at least in theory) to try his best to avoid the high carb snacks and to focus on eating his own low carb snacks brought from home.
This afternoon at 12:15, I received a phone call from the camp director. Sasha's dad and I have PTSD from receiving phone calls from teachers and camp counselors because it is almost NEVER good news. Well, today was no different. Long story short, we learned that he was caught sneaking Goldfish crackers into his pockets at camp after he was specifically told not to eat any of the (high carb) snacks. UGH! After he was caught, he did his usual meltdown and refused to talk and then threatened to elope from the camp. The director asked me to speak with Sasha but he refused to speak with me on the phone so I dropped everything at work and rushed to the scene, a 15 minute drive from my work.
When I arrived, he hadn't eloped and he had calmed down. Mostly he was sad and ashamed of himself. I took him into the car and we had a talk. What I understood from our talk was that he was triggered by the exclusion he felt when he was not allowed to eat the crackers or popcorn. He said that it made him feel sad and mad. This is nothing new, of course. Sasha has been excluded from so many normal things in life since he had his brain tumor surgery in 2011. He has historically felt especially triggered by his exclusion from food, and whenever possible, we have shielded him by removing him from situations that would cause him to feel excluded or tempted. We have usually chosen camps where campers brought their own snacks from home. At this camp, unfortunately, the snacks were served right in front of his face and he was explicitly told (by me) that he wasn't allowed to have any. Despite appearances, according to Sasha, he was not even hungry when he snuck the crackers into his pockets but he admitted that he felt "upset" earlier in the day when he was deprived of the morning snack. We continued to talk about how his long history of food deprivation has made him feel sad and angry and how he had those same feelings the very morning he ended up sneaking the crackers into his pockets. The camp director caught him taking the crackers and Sasha was forced to empty out his pockets. He ended up not eating any of the crackers.
Our discussion made me wonder if he would have acted out with the food sneaking if he was not prohibited from eating the foods that were served for snack. IF he is telling the truth that he was not even hungry when he took the snack (in fact, he ended up delaying his lunch until 2 pm today), could it be that his upset feelings incited him to act out and to take the crackers? What if the camp served low carb snacks that were on his food plan? We decided that it might be a win-win solution for him to bring Sasha-friendly snacks for camp tomorrow. He liked this idea and when we presented it to the camp director, he was pleased with the suggestion and grateful for our offer. Tomorrow, we will plan to make and bring homemade hummus dips with raw vegetables, a cheese plate, and no-bake low carb chocolate macaroons. We will see how he handles the food situation tomorrow without the temptations and the sense of exclusion. If his oxytocin is working to reduce his hyperphagia, the low carb snacks should eliminate his feelings of being excluded and provide him an opportunity to test out his ability to eat moderate portions. Perhaps I am being naïve in believing him that he took the crackers out of anger, rather than hunger...
As far as his appetite is concerned, he appears to have changed from the extremely low appetite he exhibited in the recent past- eating less than 50% of his food at most meals, skipping snacks and desserts, etc. This was such an extreme departure from his HO appetite, I knew that it would not be sustainable (recall posting #17 when he made the discovery of hunger pangs and weakness after he had eaten so little during the day). In the last few days, his food consumption at mealtimes has not been a concern but what we are seeing now with the food sneaking is starting to resemble his pre-oxytocin behavior... but WHY? I don't wish for him to return to having the appetite of an anorexic but it surely wouldn't hurt my feelings if he would just maintain a normal appetite and stop his food foraging behaviors! In the meantime, I am wondering if oxytocin is interacting with his other changing hormones and causing him to require a different dose- but what? Does he need a higher concentration, a lower concentration, a more frequent dose or less frequent dose? Or do we just stay put with our current dose and watch and wait?
If only we knew. If there is anyone out there in the WWW reading this that might help shed a clue to these changes we are seeing, please help by sharing your comments. In the meantime, I am doing my best to keep my chin up!
Yesterday his camp director told me that he was in a very good mood and very social with other campers and I thought, oh good- the oxytocin must be putting him in a good mood and making him feel social with his peers! He ended up not eating much of his lunch (typical post-oxytocin behavior) but he did eat a lot of popcorn that was served for snack at the camp : ( For dinner, he ate about two thirds of his meal and accepted a small peach for dessert without any fuss. For breakfast this morning, he made eggs and a piece of toast and passed up the opportunity to eat extra eggs that were left in the pan, saying he wasn't hungry any longer. Seeing him pass up food was a relief to me.
I learned from Sasha and his sister that the camp served snack which was always crackers, popcorn and fruit. He admitted that he had been eating the popcorn snack and then feeling somewhat tired during the day. Due to the fact that he is a hyperinsulin secreter, I wanted to ascertain if the popcorn was causing the extra fatigue or if he still needed tweaking with his hydrocortisone and thyroid medications. I had a discussion with Sasha that I wanted him to avoid the high carb snacks at camp because I wanted to see if avoiding the carbs would improve his energy throughout the day. He agreed with me (at least in theory) to try his best to avoid the high carb snacks and to focus on eating his own low carb snacks brought from home.
This afternoon at 12:15, I received a phone call from the camp director. Sasha's dad and I have PTSD from receiving phone calls from teachers and camp counselors because it is almost NEVER good news. Well, today was no different. Long story short, we learned that he was caught sneaking Goldfish crackers into his pockets at camp after he was specifically told not to eat any of the (high carb) snacks. UGH! After he was caught, he did his usual meltdown and refused to talk and then threatened to elope from the camp. The director asked me to speak with Sasha but he refused to speak with me on the phone so I dropped everything at work and rushed to the scene, a 15 minute drive from my work.
When I arrived, he hadn't eloped and he had calmed down. Mostly he was sad and ashamed of himself. I took him into the car and we had a talk. What I understood from our talk was that he was triggered by the exclusion he felt when he was not allowed to eat the crackers or popcorn. He said that it made him feel sad and mad. This is nothing new, of course. Sasha has been excluded from so many normal things in life since he had his brain tumor surgery in 2011. He has historically felt especially triggered by his exclusion from food, and whenever possible, we have shielded him by removing him from situations that would cause him to feel excluded or tempted. We have usually chosen camps where campers brought their own snacks from home. At this camp, unfortunately, the snacks were served right in front of his face and he was explicitly told (by me) that he wasn't allowed to have any. Despite appearances, according to Sasha, he was not even hungry when he snuck the crackers into his pockets but he admitted that he felt "upset" earlier in the day when he was deprived of the morning snack. We continued to talk about how his long history of food deprivation has made him feel sad and angry and how he had those same feelings the very morning he ended up sneaking the crackers into his pockets. The camp director caught him taking the crackers and Sasha was forced to empty out his pockets. He ended up not eating any of the crackers.
Our discussion made me wonder if he would have acted out with the food sneaking if he was not prohibited from eating the foods that were served for snack. IF he is telling the truth that he was not even hungry when he took the snack (in fact, he ended up delaying his lunch until 2 pm today), could it be that his upset feelings incited him to act out and to take the crackers? What if the camp served low carb snacks that were on his food plan? We decided that it might be a win-win solution for him to bring Sasha-friendly snacks for camp tomorrow. He liked this idea and when we presented it to the camp director, he was pleased with the suggestion and grateful for our offer. Tomorrow, we will plan to make and bring homemade hummus dips with raw vegetables, a cheese plate, and no-bake low carb chocolate macaroons. We will see how he handles the food situation tomorrow without the temptations and the sense of exclusion. If his oxytocin is working to reduce his hyperphagia, the low carb snacks should eliminate his feelings of being excluded and provide him an opportunity to test out his ability to eat moderate portions. Perhaps I am being naïve in believing him that he took the crackers out of anger, rather than hunger...
As far as his appetite is concerned, he appears to have changed from the extremely low appetite he exhibited in the recent past- eating less than 50% of his food at most meals, skipping snacks and desserts, etc. This was such an extreme departure from his HO appetite, I knew that it would not be sustainable (recall posting #17 when he made the discovery of hunger pangs and weakness after he had eaten so little during the day). In the last few days, his food consumption at mealtimes has not been a concern but what we are seeing now with the food sneaking is starting to resemble his pre-oxytocin behavior... but WHY? I don't wish for him to return to having the appetite of an anorexic but it surely wouldn't hurt my feelings if he would just maintain a normal appetite and stop his food foraging behaviors! In the meantime, I am wondering if oxytocin is interacting with his other changing hormones and causing him to require a different dose- but what? Does he need a higher concentration, a lower concentration, a more frequent dose or less frequent dose? Or do we just stay put with our current dose and watch and wait?
If only we knew. If there is anyone out there in the WWW reading this that might help shed a clue to these changes we are seeing, please help by sharing your comments. In the meantime, I am doing my best to keep my chin up!
Tuesday, July 19, 2016
22) How the endocrine system reveals the artificial dualism of "mental" versus "physical" health
Since I have been exposed to my son's brain tumor and all the associated endocrine issues, I have had lots of opportunities to observe the mind-body connection in action. We are all probably familiar with the age-old dualism of the mind and body, mental versus physical, mind versus brain, nature versus nurture, etc. Well, now that I have seen the endocrine system at work (and broken down), I can say that I don't believe in these dualistic categories anymore.
As a clinical psychologist by profession, I regularly encounter patients who are resistant to taking medications for their mental illnesses, even when very severe (e.g.: Recurrent Major Depression, Bipolar Disorder). When I ask them about their reasons, they say that taking medications is a sign of weakness or that it is too stigmatizing to admit that they are mentally ill and that they need medications. These same patients would not hesitate to take medications for their health if their problems resided in their lungs or bones or heart... if so, then why does the brain "get no respect"? In my opinion, this is due in part to our insistence that we are in control of our minds (or that we SHOULD be) and that it is OUR FAULT if we aren't (i.e.: if we are mentally ill). While it is true that there is such thing as free will (to a point) and that we are able to make choices about our behaviors (to a point), it is also true that there are inner workings in our brains and bodies that are far from being within our own willpower to control or manipulate.
Our experiences with Sasha on and off oxytocin have been illustrative of this point. Before he experienced a therapeutic dose of oxytocin, Sasha acted like a criminal- he would do just about anything to obtain his desired object (food)- lie, cheat and steal. His behaviors were indicative a someone with antisocial tendencies- someone with no respect for other peoples' property- someone with wanton disregard of an ethical code of conduct.
Before oxytocin, we have seen Sasha act like bizarre hoarder of things- collecting hundreds of pencils, erasers, post-it notes, paperclips, etc. No one needs to own 600 pencils! Why did he collect these things? It looked like a case of Compulsive Hoarding Disorder to me. When I gathered data through a survey on other cranios, I found a high prevalence of these behaviors and found that they were highest among those cranios with HO (57% of the cranios with HO). In fact, the cranios with HO had a 4.5 times higher prevalence of compulsive acquiring of non-food objects than the cranios without HO! Now why would a disorder like Compulsive Hoarding have anything to do with Hypothalamic Obesity?
Before oxytocin (and this is still a work-in-progress), Sasha was strangely friendless with peers despite being very friendly with adults and being a very outgoing and warm person. This has been an odd and inexplicable behavior to us. Why would a kid act almost completely aloof to other kids his age yet be drawn almost exclusively towards adults? Some kids on the ASD spectrum exhibit these behaviors- he didn't exhibit other autistic behaviors but was Sasha mildly autistic?
When he started to get therapeutic benefit from oxytocin, we saw changes in his behavior- lowered appetite, cessation of food-related obsessions, cessation of stealing behaviors, and the beginnings of increased interest in other kids... could it be that a neurohormone was changing his psychological and behavioral patterns?
If this is the case, how do we conceptualize of what is "psychological" and what is "physical"?
The endocrine system holds many mysteries... and I hope to understand them better through our experiences!
As a clinical psychologist by profession, I regularly encounter patients who are resistant to taking medications for their mental illnesses, even when very severe (e.g.: Recurrent Major Depression, Bipolar Disorder). When I ask them about their reasons, they say that taking medications is a sign of weakness or that it is too stigmatizing to admit that they are mentally ill and that they need medications. These same patients would not hesitate to take medications for their health if their problems resided in their lungs or bones or heart... if so, then why does the brain "get no respect"? In my opinion, this is due in part to our insistence that we are in control of our minds (or that we SHOULD be) and that it is OUR FAULT if we aren't (i.e.: if we are mentally ill). While it is true that there is such thing as free will (to a point) and that we are able to make choices about our behaviors (to a point), it is also true that there are inner workings in our brains and bodies that are far from being within our own willpower to control or manipulate.
Our experiences with Sasha on and off oxytocin have been illustrative of this point. Before he experienced a therapeutic dose of oxytocin, Sasha acted like a criminal- he would do just about anything to obtain his desired object (food)- lie, cheat and steal. His behaviors were indicative a someone with antisocial tendencies- someone with no respect for other peoples' property- someone with wanton disregard of an ethical code of conduct.
Before oxytocin, we have seen Sasha act like bizarre hoarder of things- collecting hundreds of pencils, erasers, post-it notes, paperclips, etc. No one needs to own 600 pencils! Why did he collect these things? It looked like a case of Compulsive Hoarding Disorder to me. When I gathered data through a survey on other cranios, I found a high prevalence of these behaviors and found that they were highest among those cranios with HO (57% of the cranios with HO). In fact, the cranios with HO had a 4.5 times higher prevalence of compulsive acquiring of non-food objects than the cranios without HO! Now why would a disorder like Compulsive Hoarding have anything to do with Hypothalamic Obesity?
Before oxytocin (and this is still a work-in-progress), Sasha was strangely friendless with peers despite being very friendly with adults and being a very outgoing and warm person. This has been an odd and inexplicable behavior to us. Why would a kid act almost completely aloof to other kids his age yet be drawn almost exclusively towards adults? Some kids on the ASD spectrum exhibit these behaviors- he didn't exhibit other autistic behaviors but was Sasha mildly autistic?
When he started to get therapeutic benefit from oxytocin, we saw changes in his behavior- lowered appetite, cessation of food-related obsessions, cessation of stealing behaviors, and the beginnings of increased interest in other kids... could it be that a neurohormone was changing his psychological and behavioral patterns?
If this is the case, how do we conceptualize of what is "psychological" and what is "physical"?
The endocrine system holds many mysteries... and I hope to understand them better through our experiences!
21) Uh oh... trouble in paradise?
I never promised that this blog would only contain happy and good news. I believe in telling it like it is so here is what happened today and yesterday:
Sasha has been on his once every three day dose of oxytocin and things have been going well. He received his last dose yesterday morning. Unfortunately, he accidentally sprayed it into the nostril where he had just applied some petroleum jelly- he had been having bloody noses in one nostril and was applying petroleum jelly several times a day on a daily basis to prevent the nose bleeds. In case you're wondering, we don't think the nose bleeds have anything to do with the oxytocin spray because they have long preceded his oxytocin spray. The petroleum jelly has been working to prevent the nosebleeds and it all worked out great when he was spraying the OTHER nostril with oxytocin...
Anyway, I was aware of his choosing the incorrect nostril yesterday and I was vigilant about it in case it ended up not being properly absorbed.
Well... maybe I was being a little too vigilant (or not) but I did notice my Kitchen Bitch hackles raising a few times when I thought I saw him acting like his old sneaky self again around food... then yesterday his sister told me that her Kind bar was mysteriously missing from her lunch box yesterday (they attend the same camp this week)... he was also eating more of his food than he had been eating at snacks and meal times... he was also more irritable and argumentative about food... Oh, no, I was starting to see the old Sasha again!
Then today was the clincher that told me something was definitely amiss... his camp director called to say that he saw Sasha eating a small chocolate candy bar (who knows where it came from??) and when confronted, Sasha denied it. However, since the director pointed out the evidence while he was caught in the act, he had no choice but to admit it. In his typical fashion, Sasha became sullen and withdrawn. The director later saw Sasha writing his name on the bottom of another person's ceramic project as if he were the one to have made the piece (!)... it was as if he were trying to steal another person's creation and claim it as his own. As an aside, he has had some past problems with compulsive acquiring of non-food items. I wrote up a survey on this topic for cranios and received 146 responses from survivors or their caregiver proxies and learned that the acquiring (collecting, hoarding, stealing) of non-food items is also a phenomenon among cranios. The high prevalence of this behavior has not been documented in the medical and psychiatric literature but I plan to write a paper describing this behavioral pattern. More about this later in another post...
Getting back to today- I ended up talking to the director who was VERY kind and understanding and then I talked with Sasha about his behavior at camp. I knew to be gentle and non-confrontational because I did not want him to melt down and become a larger problem for the camp director and staff. Luckily, Sasha responded to my gentle approach and admitted to me, "something is wrong with me- I don't think the oxytocin is working now." I was proud that he was able to verbalize it and admit that he felt off-kilter and I praised him for his ability to tell this to me. I then reassured him that I suspected that the oxytocin was not absorbed due to his choosing the petroleum jellied nostril and that we would fix it by giving him an additional spray this afternoon. Apparently, he was able to calm down for the rest of the afternoon and had a good rest of the day. He received another dose today when he returned home and we will see if and when he has a therapeutic effect to today's dose.
In truth, it is hard to be sure what actually happened. My strongest hunch is that the spray was not absorbed into the nasal passage due to his application of petroleum jelly but I don't know that for sure. The therapeutic dose of his oxytocin (to date) is very strange- I don't understand how a hormone that has a half-life of 20 minutes (or less) can last in the CNS for 3 days...! This is truly an endocrinological mystery I am unable to explain. Of course, we have other fears- is he getting immune to the dose? Does he need more? Does he need less? Does the oxytocin interact with the thyroid dose that is currently being raised so that the increased thyroid dose affects the oxytocin's therapeutic levels? Who knows?? This is the Oxytocin Experiment, after all, so it is all unknown and not well understood, at least by me.
All we can do is stand by and wait for tomorrow or later to see how Sasha responds to his dose from today. Please keep us in your thoughts and prayers and keep your fingers crossed for a better day tomorrow!
Sasha has been on his once every three day dose of oxytocin and things have been going well. He received his last dose yesterday morning. Unfortunately, he accidentally sprayed it into the nostril where he had just applied some petroleum jelly- he had been having bloody noses in one nostril and was applying petroleum jelly several times a day on a daily basis to prevent the nose bleeds. In case you're wondering, we don't think the nose bleeds have anything to do with the oxytocin spray because they have long preceded his oxytocin spray. The petroleum jelly has been working to prevent the nosebleeds and it all worked out great when he was spraying the OTHER nostril with oxytocin...
Anyway, I was aware of his choosing the incorrect nostril yesterday and I was vigilant about it in case it ended up not being properly absorbed.
Well... maybe I was being a little too vigilant (or not) but I did notice my Kitchen Bitch hackles raising a few times when I thought I saw him acting like his old sneaky self again around food... then yesterday his sister told me that her Kind bar was mysteriously missing from her lunch box yesterday (they attend the same camp this week)... he was also eating more of his food than he had been eating at snacks and meal times... he was also more irritable and argumentative about food... Oh, no, I was starting to see the old Sasha again!
Then today was the clincher that told me something was definitely amiss... his camp director called to say that he saw Sasha eating a small chocolate candy bar (who knows where it came from??) and when confronted, Sasha denied it. However, since the director pointed out the evidence while he was caught in the act, he had no choice but to admit it. In his typical fashion, Sasha became sullen and withdrawn. The director later saw Sasha writing his name on the bottom of another person's ceramic project as if he were the one to have made the piece (!)... it was as if he were trying to steal another person's creation and claim it as his own. As an aside, he has had some past problems with compulsive acquiring of non-food items. I wrote up a survey on this topic for cranios and received 146 responses from survivors or their caregiver proxies and learned that the acquiring (collecting, hoarding, stealing) of non-food items is also a phenomenon among cranios. The high prevalence of this behavior has not been documented in the medical and psychiatric literature but I plan to write a paper describing this behavioral pattern. More about this later in another post...
Getting back to today- I ended up talking to the director who was VERY kind and understanding and then I talked with Sasha about his behavior at camp. I knew to be gentle and non-confrontational because I did not want him to melt down and become a larger problem for the camp director and staff. Luckily, Sasha responded to my gentle approach and admitted to me, "something is wrong with me- I don't think the oxytocin is working now." I was proud that he was able to verbalize it and admit that he felt off-kilter and I praised him for his ability to tell this to me. I then reassured him that I suspected that the oxytocin was not absorbed due to his choosing the petroleum jellied nostril and that we would fix it by giving him an additional spray this afternoon. Apparently, he was able to calm down for the rest of the afternoon and had a good rest of the day. He received another dose today when he returned home and we will see if and when he has a therapeutic effect to today's dose.
In truth, it is hard to be sure what actually happened. My strongest hunch is that the spray was not absorbed into the nasal passage due to his application of petroleum jelly but I don't know that for sure. The therapeutic dose of his oxytocin (to date) is very strange- I don't understand how a hormone that has a half-life of 20 minutes (or less) can last in the CNS for 3 days...! This is truly an endocrinological mystery I am unable to explain. Of course, we have other fears- is he getting immune to the dose? Does he need more? Does he need less? Does the oxytocin interact with the thyroid dose that is currently being raised so that the increased thyroid dose affects the oxytocin's therapeutic levels? Who knows?? This is the Oxytocin Experiment, after all, so it is all unknown and not well understood, at least by me.
All we can do is stand by and wait for tomorrow or later to see how Sasha responds to his dose from today. Please keep us in your thoughts and prayers and keep your fingers crossed for a better day tomorrow!
Saturday, July 16, 2016
20) Blogging about blogging- my gratitude to you all!
Hi Everyone!
I can't believe that I started this blog on July 2- only two weeks ago! You all have provided me with such inspiration to share about all that we've experienced with oxytocin in our journey with this horrible brain tumor and its insidious aftermath. Thank you for following and for being so supportive and kind in your encouragement of my writing this blog. I do hope that it is helping others by providing hope for these awful conditions we or our loved ones suffer.
Perhaps I should mention here that I can see where the readers are located and that the blog is being read by an international group of people (YOU!) I am so honored that people from all over the world are taking an interest in this topic and in our story. Hello Albania! Hello South Africa! Hello South Korea, Israel, Spain, Poland, Australia, Canada, Ireland...! There are many more countries that I am not listing here... so hello everyone! I even had to look one up which turned out to be a tiny island off the coast of Madagascar! Bonjour Réunion!
I have also sent the blog to academic obesity researchers who write and publish papers on hypothalamic obesity. It has definitely piqued their interest so I am hopeful that spreading the word on oxytocin will inspire more research into this amazing hormone replacement. If you haven't done so already, I recommend that you also tell your doctors about our experience so that they may also be enlightened about oxytocin. I am not saying that it is a wonder drug for everyone but the research is definitely only emerging on its use for hypothalamic obesity. I know only that people with Prader-Willi Syndrome have experienced such dramatic effects but don't know if others with non-PWS Hypothalamic Obesity have experienced the effects we have seen in these last few weeks.
Speaking of oxytocin research with PWS, here is an update about upcoming phase 2 dosing studies. See here for the good news: http://www.pwsausa.org/update-oxytocin-phase-2-trial/.
Tonight I had the chance to finally talk on the phone with Dr. Friedman, Sasha's oxytocin prescriber. Even he was surprised to hear about Sasha's dramatic changes on oxytocin. Apparently, Sasha is his only patient with hypothalamic obesity and one of his only pediatric patients. I expressed my deep gratitude that he gave us a chance to try oxytocin and he complimented me on my hard work and research. He used the word "miracle" to describe what I was reporting to him about Sasha. Indeed, it does feel like a miracle. But what is amazing is that if these dramatic changes can happen with us, it can someday happen to you.
Believe it.
But don't stop there... advocate for yourselves and your loved ones. Don't be afraid to be push the medical establishment. As I mentioned in my blog post #10, this was all started by my involvement with social media and individuals in the various Facebook Groups to which I belong (a shout out to some of the moms on the PWS group who encouraged me to contact PWS/obesity researcher Dr. Jennifer Miller and a special shout out to Jen B. of the PWS group who shared a webinar by Dr. Miller that gave me the clue on correct dosing).
Let's keep crowdsourcing for a cure!
As one of my favorite cranio survivor says (you know who you are!)... WOO HOO!
I can't believe that I started this blog on July 2- only two weeks ago! You all have provided me with such inspiration to share about all that we've experienced with oxytocin in our journey with this horrible brain tumor and its insidious aftermath. Thank you for following and for being so supportive and kind in your encouragement of my writing this blog. I do hope that it is helping others by providing hope for these awful conditions we or our loved ones suffer.
Perhaps I should mention here that I can see where the readers are located and that the blog is being read by an international group of people (YOU!) I am so honored that people from all over the world are taking an interest in this topic and in our story. Hello Albania! Hello South Africa! Hello South Korea, Israel, Spain, Poland, Australia, Canada, Ireland...! There are many more countries that I am not listing here... so hello everyone! I even had to look one up which turned out to be a tiny island off the coast of Madagascar! Bonjour Réunion!
I have also sent the blog to academic obesity researchers who write and publish papers on hypothalamic obesity. It has definitely piqued their interest so I am hopeful that spreading the word on oxytocin will inspire more research into this amazing hormone replacement. If you haven't done so already, I recommend that you also tell your doctors about our experience so that they may also be enlightened about oxytocin. I am not saying that it is a wonder drug for everyone but the research is definitely only emerging on its use for hypothalamic obesity. I know only that people with Prader-Willi Syndrome have experienced such dramatic effects but don't know if others with non-PWS Hypothalamic Obesity have experienced the effects we have seen in these last few weeks.
Speaking of oxytocin research with PWS, here is an update about upcoming phase 2 dosing studies. See here for the good news: http://www.pwsausa.org/update-oxytocin-phase-2-trial/.
Tonight I had the chance to finally talk on the phone with Dr. Friedman, Sasha's oxytocin prescriber. Even he was surprised to hear about Sasha's dramatic changes on oxytocin. Apparently, Sasha is his only patient with hypothalamic obesity and one of his only pediatric patients. I expressed my deep gratitude that he gave us a chance to try oxytocin and he complimented me on my hard work and research. He used the word "miracle" to describe what I was reporting to him about Sasha. Indeed, it does feel like a miracle. But what is amazing is that if these dramatic changes can happen with us, it can someday happen to you.
Believe it.
But don't stop there... advocate for yourselves and your loved ones. Don't be afraid to be push the medical establishment. As I mentioned in my blog post #10, this was all started by my involvement with social media and individuals in the various Facebook Groups to which I belong (a shout out to some of the moms on the PWS group who encouraged me to contact PWS/obesity researcher Dr. Jennifer Miller and a special shout out to Jen B. of the PWS group who shared a webinar by Dr. Miller that gave me the clue on correct dosing).
Let's keep crowdsourcing for a cure!
As one of my favorite cranio survivor says (you know who you are!)... WOO HOO!
19) Our low carb meal plan + favorite dessert recipes!
I just finished eating our Saturday breakfast and enjoyed a delicious low carb scone that Sasha baked yesterday (the KB was noticeably absent then!). Some readers have asked me about Sasha's low-carb meal plan- I intentionally want to call it a "meal plan" versus a "diet" because it is not low calorie, it is not intended for weight loss, and it is what we intend to eat forever or until we come up with a better way of eating. When we kept painstaking track of his food in Myfitnesspal for about one week, he was eating about 1700-1800 calories a day and averaged about 100 grams of carbohydrates per day (plus whatever he snuck without our knowledge!). This was tracked shortly after we transitioned him from a low fat plan. To my dismay, we were ill-advised by his doctors to eat "low sugar and low fat" when we learned of his high lipids- instead, we should have been told to eat "low carb and higher fat." When we were on the low fat diet, we called it the "low fun diet" and it was indeed quite un-fun since we kept him at under 20 grams of fat a day. The food he ended eating to compensate for the low fat allowance was exactly what he should not have been eating- he ate foods low in sugar but high in carbs- rice crackers, starchy veggies, bagels, grains, etc.
Well, for the last two years, we've converted our household to a lower carb, higher fat lifestyle and we are enjoying it! To give an example of what we typically eat, here are some examples of menus:
Breakfast:
Egg frittata with kale and shredded cheddar cheese
Small serving of fruit or one slice of low carb whole wheat bread
OR
Steel cut oatmeal with peanut butter
Greek yogurt with coconut chips and almond slivers, sweetened with Erythitol sugar substitute
Lunch:
Salad of greens, tomatoes, cucumbers, feta cheese, sunflower seeds, grilled chicken breast
Small piece of fruit
Nuts (almonds or pistachios)
Hummus and celery/carrots
Dinner:
Carnitas (roasted pork)
Cauliflower rice
Green salad
OR
Large mixed salad (spinach, bacon, carrots, balsamic onions/bell peppers, feta cheese)
Grilled chicken
For snacks, Sasha eats Greek yogurt with fruit or nuts.
For dessert, we have found some great recipes online and Sasha would like to share his favorites with you- my apologies to the non-Americans- we are American and still use the old British system and haven't yet converted to the metric system!
Well, for the last two years, we've converted our household to a lower carb, higher fat lifestyle and we are enjoying it! To give an example of what we typically eat, here are some examples of menus:
Breakfast:
Egg frittata with kale and shredded cheddar cheese
Small serving of fruit or one slice of low carb whole wheat bread
OR
Steel cut oatmeal with peanut butter
Greek yogurt with coconut chips and almond slivers, sweetened with Erythitol sugar substitute
Lunch:
Salad of greens, tomatoes, cucumbers, feta cheese, sunflower seeds, grilled chicken breast
Small piece of fruit
Nuts (almonds or pistachios)
Hummus and celery/carrots
Dinner:
Carnitas (roasted pork)
Cauliflower rice
Green salad
OR
Large mixed salad (spinach, bacon, carrots, balsamic onions/bell peppers, feta cheese)
Grilled chicken
For snacks, Sasha eats Greek yogurt with fruit or nuts.
For dessert, we have found some great recipes online and Sasha would like to share his favorites with you- my apologies to the non-Americans- we are American and still use the old British system and haven't yet converted to the metric system!
Low-carb Berry Scone
Here is the recipe- the only thing we changed is that we doubled the amount of berries!
For those of you who want to learn more about erythitol (Swerve), please see this website: https://authoritynutrition.com/erythritol/
Another favorite is the No-bake Chocolate Macaroons- YUMMY! If you like peanut butter, you can substitute the coconut oil for peanut butter- then it tastes like a Reese's Peanut Butter Cup (with coconut): http://www.tessadomesticdiva.com/2012/01/raw-chocolate-macaroons-hail-merry.html
The only thing we noticed about this recipe is that it may be a little dry so we added more coconut oil (or peanut butter) to allow it to stick together into balls without it crumbling apart. If you put them into the freezer for a bit, they will harden and be easier to eat!
BON APPÉTIT!
Friday, July 15, 2016
18) Introducing some lifestyle changes, gradually...
So if it wasn't obvious to you already- in our pre-oxytocin life, we had to lock the fridge and all cabinets in our house containing food. We had to stand within one meter of Sasha at all times when he was in the kitchen with an unlocked refrigerator (we permitted him to prepare his lunch and to help make other meals with supervision). It was hard to cook in the kitchen with Sasha in the house because he almost always insisted on helping. He was actually a great help but it was also risky because he would find ways to sneak food into his mouth or pockets if we blinked or were distracted for a second or even when we were watching! When a person is hungry and dealing with what feels like survival, one can be very bold in one's actions and Sasha would take full advantage of whatever food he could sneak when it was available to him. I did NOT like managing him in the kitchen and this is why I gave myself the nickname of "Kitchen Bitch" (or KB, for short) whenever I had to prepare meals with him in the house. It was really sad sometimes, too- if I was extra tired or irritable and I didn't want him to help me cook, I would order him out of the kitchen and he would stand just at the periphery; unable to move, just standing there watching and unable to tear himself away from the opportunity to scrounge a few morsels of food into his hungry self... so sad... but it was SO draining for me to have to manage him around the accessible food that I would angrily order him out of the kitchen...see why I called myself the KB?
A photo of the lock on our fridge:
As we begin to trust Sasha more, we will be unlocking the fridge and cabinets on a gradual basis. Perhaps we will keep the fridge unlocked for a few hours a day, to start. We have discussed giving him this freedom in a gradual way because we don't want him to feel unsafe. The locked up kitchen has historically been a way for him to feel more secure because any and all available food would have typically drive him to distraction.
The other lifestyle change will be allowing him back into grocery stores. As a rule, I stopped allowing him to go grocery shopping with me because I caught him shoplifting food and I couldn't manage him in the stores AND get my shopping done at the same time. Just today we went to Trader Joe's and I felt much more relaxed. He told me that he didn't have urges or temptations to steal food- when he has told me this in the past, I didn't believe him. Today I did.
Thursday, July 14, 2016
17) Interview #2: Sasha talks about "stomach hunger" and "mind hunger"
If you read post #16, you will have noted that Sasha did not eat very much for lunch or afternoon snack. During dinner, he also did not eat much. He said he wasn't very hungry. After his meager dinner, he complained of having a stomachache. I tried to get him to explain what type of stomachache it was; was it the kind that you got when you needed to use the restroom? Or was it the kind that you got when you felt like you had to throw up? Or was it the kind you got when you were hungry? Or maybe it was the kind you got when you were too full? Sasha was unable to answer the question. He said he felt confused. We continued our conversation and this is what ensued:
Sasha: I don't know what this feeling is. My stomach just feels kind of upset.
Mom: Can you remember another time when you felt this way?
Sasha: Hmmm... Maybe. I remember when I first started getting the oxytocin spray. During the first couple of weeks, I had the same feeling in my stomach. I remember not understanding the feeling and being confused about it. It's kind of how I feel right now. My stomach hurts but I don't understand why.
Mom: Are you feeling well enough to go outside for a walk? If so, let's just take a walk because it's a really nice day outside.
Sasha: OK, let's do that.
Sasha, his dad, and I left the house for a casual stroll in our neighborhood. About halfway through our walk, Sasha started to complain about feeling kind of weak and continuing to have a tummyache.
Mom: Are you feeling all right? I'm wondering if you're weak from not eating! Why don't we stop by a restaurant and you can rest and get a bite to eat?
Sasha: OK, that sounds like a good idea. Maybe I am just super hungry since I haven't eaten very much today. Could this be what I'm feeling, hungry?
Mom: Well, let's just see if you feel better after you eat something!
We found a Mexican taqueria and Sasha ordered a quesadilla. Before it arrived, he realized that he was definitely hungry. He ate it up with gusto!
Sasha: Oh, I feel so much better now! I think I figured out that I was hungry. That is why my stomach hurt! Before oxytocin, I never experienced this type of hunger because I never let myself go that long without eating! What I thought was hunger before must have been my mind telling me I was hungry. Today, I finally realized what it is like to have my tummy telling me that I'm hungry! It's really a very different feeling, something I never felt before oxytocin!
Mom: Wow, Sasha...That is really interesting! You are now getting acquainted with actual hunger signals from your body for the first time since your brain tumor! How cool is that?!
Sasha: Yeah, that's pretty cool. I guess I need to make sure I don't go for too long without eating because I didn't like the feeling that I had in my stomach today.
Sasha: I don't know what this feeling is. My stomach just feels kind of upset.
Mom: Can you remember another time when you felt this way?
Sasha: Hmmm... Maybe. I remember when I first started getting the oxytocin spray. During the first couple of weeks, I had the same feeling in my stomach. I remember not understanding the feeling and being confused about it. It's kind of how I feel right now. My stomach hurts but I don't understand why.
Mom: Are you feeling well enough to go outside for a walk? If so, let's just take a walk because it's a really nice day outside.
Sasha: OK, let's do that.
Sasha, his dad, and I left the house for a casual stroll in our neighborhood. About halfway through our walk, Sasha started to complain about feeling kind of weak and continuing to have a tummyache.
Mom: Are you feeling all right? I'm wondering if you're weak from not eating! Why don't we stop by a restaurant and you can rest and get a bite to eat?
Sasha: OK, that sounds like a good idea. Maybe I am just super hungry since I haven't eaten very much today. Could this be what I'm feeling, hungry?
Mom: Well, let's just see if you feel better after you eat something!
We found a Mexican taqueria and Sasha ordered a quesadilla. Before it arrived, he realized that he was definitely hungry. He ate it up with gusto!
Sasha: Oh, I feel so much better now! I think I figured out that I was hungry. That is why my stomach hurt! Before oxytocin, I never experienced this type of hunger because I never let myself go that long without eating! What I thought was hunger before must have been my mind telling me I was hungry. Today, I finally realized what it is like to have my tummy telling me that I'm hungry! It's really a very different feeling, something I never felt before oxytocin!
Mom: Wow, Sasha...That is really interesting! You are now getting acquainted with actual hunger signals from your body for the first time since your brain tumor! How cool is that?!
Sasha: Yeah, that's pretty cool. I guess I need to make sure I don't go for too long without eating because I didn't like the feeling that I had in my stomach today.
16) Picture proof of his diminished appetite
They say a picture is worth 1000 words. Here is a picture of what Sasha packed for his lunch today.
And this is what he brought home at 4 o'clock.
You can hardly tell but he did eat a little bit of his salad. He said he didn't feel the need to eat the rest. Should I be worried he isn't eating enough? This is an example of a day when he left a great deal of food unfinished. On most days he eats about 50% of what he packs for lunch and finishes a modest amount of dinner. If anyone had told me even one month ago that I would ever be concerned about my son not eating enough, I would have tossed back my head and laughed in their face!!
In the not too distant past, he would pack a much larger lunch, perhaps one and a half times the size and still feel hungry and have the urge to forage for more food. Now, as you can see, he is able to leave food uneaten if he doesn't feel hungry. I guess the difference is that he is actually able to feel sated. We are really looking forward to see how it will affect his weight once his thyroid levels are up to their proper levels.
15) Improved sleep and dreams...Moosey goes to Hawaii
The hypothalamus is also responsible for circadian rhythm and sleep. Since Sasha's brain surgery, he has had disrupted sleep. He used to have central and obstructive sleep apnea and used a BiPAP machine but luckily, he was able to have an adenoidtonsillectomy which greatly reduced his apnea and his need for a machine. Sasha takes melatonin every night to go to sleep but even so, he reports that he typically wakes up 1 to 2 times during the night and has trouble falling back asleep.
Recently since starting oxytocin, he reports feeling more rested when he wakes up in the morning and having fewer middle of the night wakenings. Last night, he recalled having his very first dream since brain surgery! In the dream, his beloved stuffed moose, Moosey, takes a plane to Hawaii. Sasha doesn't remember anything else besides this but he was pleased that he had this happy dream. You don't have to be a Jungian analyst to analyze this one!
Recently since starting oxytocin, he reports feeling more rested when he wakes up in the morning and having fewer middle of the night wakenings. Last night, he recalled having his very first dream since brain surgery! In the dream, his beloved stuffed moose, Moosey, takes a plane to Hawaii. Sasha doesn't remember anything else besides this but he was pleased that he had this happy dream. You don't have to be a Jungian analyst to analyze this one!
Here is a paper that explains the relationship between sleep and obesity:
Wednesday, July 13, 2016
14) Adjusting other hormones
Sasha's thyroid levels are very low, as revealed by recent testing. His recent cholesterol panel also indicates his thyroid function is off with very elevated triglycerides and very low HDL levels. We will correct for his hypothyroidism by raising thyroid hormones. We were also advised to raise his corticosteroids since increased thyroid replacement may require more cortisol replacement. His IGF (growth hormone) levels tested in the bottom 50% but weren't horribly low- will see what his endo wants us to do with it. We will see if these adjustments help him stabilize/lose weight, improve his energy, and decrease his high lipids.
The saga of the complex web of hormone management continues!
The saga of the complex web of hormone management continues!
Monday, July 11, 2016
13) One piece of the weight gain mystery solved!
To answer one of the questions about why Sasha may be gaining weight- we just got his thyroid tests back and both his free T4 and total T3 came back low. His T4 tests were well below the normal range and his total T3 tests were in the lowest quartile. Historically, when his thyroid levels have been low, he has gained weight rapidly and has been extra tired.
It is looking like the oxytocin has affected some of his hormones including his thyroid hormones. I must admit, I am feeling a bit victorious in figuring this out and am now awaiting instructions from his endo as to how much to raise his T4 and T3 medicines. More later on what we learn about his growth hormone level- stay tuned!
It is looking like the oxytocin has affected some of his hormones including his thyroid hormones. I must admit, I am feeling a bit victorious in figuring this out and am now awaiting instructions from his endo as to how much to raise his T4 and T3 medicines. More later on what we learn about his growth hormone level- stay tuned!
12) The delicate art of endocrinology- side effects of adding oxytocin
I am not an endocrinologist nor am I a physician. I have great respect for those who attempt to understand the complicated world of endocrinology as it has been revealed to me through my son's panhypopituitary status. It has certainly taught me how complex and convoluted it is to manage all his missing hormones.
That said, my son continues to benefit from a reduced appetite on the oxytocin overall. HOWEVER, there have been some "side effects" and other confounding variables that we are still trying to figure out. To lay out the observations:
1. He seems to be more tired after having started oxytocin. He has been more sleepy, for example, in the middle of the day when he would not be normally. He did appear to have some symptoms of illness so we ended up having to "stress dose" by doubling up on his hydrocortisone. This seemed to allay the day time somnolence.
There has been some discussion among others who take oxytocin that other hormones become affected by the addition of a new one (in our case, oxytocin)- some report that corticosteroids will require raising, some report that they require lowering. Who the heck knows or could understand that?! Because oxytocin is also made in the hypothalamus and released in the posterior pituitary and has antidiuretic properties, some also report being able to eliminate or greatly reduce vasopressin replacement (DDAVP) while on oxytocin- this has certainly not been the case for Sasha who continues to take an extremely high amount of the DDAVP (anti-diuretic hormone) AND still manages to have very high sodium levels.
2. Despite his lowered appetite, Sasha has put on some weight very recently (2 kilos in the last week). We know that this is not "water weight" since he has Diabetes Insipidus and since we measure his sodium levels with his weight. Some theories to possibly explain his recent and rapid weight gain with lowered appetite:
a) His double dose of corticosteroids may have caused an increase in his weight since he was double dosed in the last week due to illness.
b) His other hormones (thyroid and growth, for example) may also be thrown off by the addition of the oxytocin. We had these levels tested today and are awaiting the results to see if they will require changing/raising since both insufficient GH and insufficient thyroid replacement can cause weight gain.
c) We just returned from a weekend at a family camp where they did not serve our usual low carb food choices. He did not overeat by normal people's standards but because he has HO and is a hyperinsulin secreter, carbohydrates are like crack cocaine for him. Even eating a little bit more (as in adding one sugary dessert per day and one serving of bread or potatoes per day) has historically caused him to gain 5 pounds in one weekend!
Strangely enough, when we returned home from the family camp yesterday afternoon, we got back to our normal low carb lifestyle. Sasha ate a salad for lunch and was happily sated by it. He ate another hearty low carb salad for dinner and didn't even finish it. I don't think he even asked for a dessert. For breakfast today he ate his normal breakfast (omelette, small serving of fruit) and for lunch he had a tostada with carnitas. His appetite was quite modest and he appeared to be quite satisfied in the way we have observed him to be since his oxytocin has been working.
We have a working hypothesis that the combination of the the increased steroids in the last 5 days and the increased carbs over the weekend may have caused the weight gain. We are waiting to find out about his GH and thyroid levels to see if they may also require raising. I will keep you posted as I learn more and try to figure out this mysterious thing we call the endocrine system!
Feel free to share your comments and observations about this post, especially if you have personal or professional experience adding oxytocin to your cocktail of HRT medications! Thank you!
That said, my son continues to benefit from a reduced appetite on the oxytocin overall. HOWEVER, there have been some "side effects" and other confounding variables that we are still trying to figure out. To lay out the observations:
1. He seems to be more tired after having started oxytocin. He has been more sleepy, for example, in the middle of the day when he would not be normally. He did appear to have some symptoms of illness so we ended up having to "stress dose" by doubling up on his hydrocortisone. This seemed to allay the day time somnolence.
There has been some discussion among others who take oxytocin that other hormones become affected by the addition of a new one (in our case, oxytocin)- some report that corticosteroids will require raising, some report that they require lowering. Who the heck knows or could understand that?! Because oxytocin is also made in the hypothalamus and released in the posterior pituitary and has antidiuretic properties, some also report being able to eliminate or greatly reduce vasopressin replacement (DDAVP) while on oxytocin- this has certainly not been the case for Sasha who continues to take an extremely high amount of the DDAVP (anti-diuretic hormone) AND still manages to have very high sodium levels.
2. Despite his lowered appetite, Sasha has put on some weight very recently (2 kilos in the last week). We know that this is not "water weight" since he has Diabetes Insipidus and since we measure his sodium levels with his weight. Some theories to possibly explain his recent and rapid weight gain with lowered appetite:
a) His double dose of corticosteroids may have caused an increase in his weight since he was double dosed in the last week due to illness.
b) His other hormones (thyroid and growth, for example) may also be thrown off by the addition of the oxytocin. We had these levels tested today and are awaiting the results to see if they will require changing/raising since both insufficient GH and insufficient thyroid replacement can cause weight gain.
c) We just returned from a weekend at a family camp where they did not serve our usual low carb food choices. He did not overeat by normal people's standards but because he has HO and is a hyperinsulin secreter, carbohydrates are like crack cocaine for him. Even eating a little bit more (as in adding one sugary dessert per day and one serving of bread or potatoes per day) has historically caused him to gain 5 pounds in one weekend!
Strangely enough, when we returned home from the family camp yesterday afternoon, we got back to our normal low carb lifestyle. Sasha ate a salad for lunch and was happily sated by it. He ate another hearty low carb salad for dinner and didn't even finish it. I don't think he even asked for a dessert. For breakfast today he ate his normal breakfast (omelette, small serving of fruit) and for lunch he had a tostada with carnitas. His appetite was quite modest and he appeared to be quite satisfied in the way we have observed him to be since his oxytocin has been working.
We have a working hypothesis that the combination of the the increased steroids in the last 5 days and the increased carbs over the weekend may have caused the weight gain. We are waiting to find out about his GH and thyroid levels to see if they may also require raising. I will keep you posted as I learn more and try to figure out this mysterious thing we call the endocrine system!
Feel free to share your comments and observations about this post, especially if you have personal or professional experience adding oxytocin to your cocktail of HRT medications! Thank you!
Saturday, July 9, 2016
11) Socializing is fun and relaxing now!
Socializing "under the influence of oxytocin" (by proxy) is fun! It's a type of fun that only a caregiver of someone who used to suffer from HO can appreciate! Instead of constantly being on high alert every time Sasha moves out of sight to follow him around like a conjoined twin lest he have access to food he isn't permitted to eat, I can relax. Instead of feeling completely stressed every time food appears on the scene and have to strategize on how to get him away from it, I can watch him take a moderate helping and not necessarily eat it all up. Now when we are at parties, I can even concentrate on having a conversation with another adult without having to keep an hawk eye on Sasha's whereabouts!
Sasha has also been enjoying himself more at social events.
We are attending a family camp for visually impaired people (another one of his disabilities from the brain tumor) this weekend. While at camp, we still have been mindful in knowing his general whereabouts but each time we (habitually) went to "see what Sasha was up to", we saw him chatting up people and (to our shock) NOT near food or in search of food. I caught myself on at least six occasions today noticing the moments he did NOT ask for food- it was weird indeed... All that time and energy he used to spend focusing on food... anticipating his next snack or meal, envying the other people's food, complaining about the snack that he got which was inadequate for his appetite, scheming the opportunity to sneak some food, feeling ashamed for being caught stealing food, arguing and having emotional meltdowns about food, etc. There was a strange absence of these events and in their place was a spacious quality, a liberation...peace. Now, Sasha can save that energy and time for enjoying the activities and company of other people at a party... And so can I!!
Sasha has also been enjoying himself more at social events.
We are attending a family camp for visually impaired people (another one of his disabilities from the brain tumor) this weekend. While at camp, we still have been mindful in knowing his general whereabouts but each time we (habitually) went to "see what Sasha was up to", we saw him chatting up people and (to our shock) NOT near food or in search of food. I caught myself on at least six occasions today noticing the moments he did NOT ask for food- it was weird indeed... All that time and energy he used to spend focusing on food... anticipating his next snack or meal, envying the other people's food, complaining about the snack that he got which was inadequate for his appetite, scheming the opportunity to sneak some food, feeling ashamed for being caught stealing food, arguing and having emotional meltdowns about food, etc. There was a strange absence of these events and in their place was a spacious quality, a liberation...peace. Now, Sasha can save that energy and time for enjoying the activities and company of other people at a party... And so can I!!
Thursday, July 7, 2016
10) How you, yes, I mean YOU, helped to inspire this research- the story behind the discovery
I wrote this essay to be read over my community's public radio station. It tells a very succinct story of how social media was a huge part of making this oxytocin experiment possible!
"As a late adopter of social media, I always thought of Facebook and other such sites as places for friends, both actual and virtual, to post photos of their latest vacations or to share commentary on a current event. I never really understood the value of having a virtual community since I felt that I already had a meaningful social network amongst my real friends. All of that changed in 2011 when my then 8-year-old son was diagnosed with a rare brain tumor called craniopharyngioma.
My son had a 14-hour long brain surgery to remove the tumor and a 6-week recovery in the hospital following the surgery. The surgery saved his life but he was left to deal with the aftermath of complex medical conditions for the rest of his life.
Despite my previous lack of involvement with social media, I ended up joining an online support group and several Facebook groups for his rare condition. Besides receiving emotional support, I have also learned a tremendous amount that I would have never learned anywhere else. At first I was nervous in reading the medical advice from the other members and I thought, shouldn’t they be getting advice from their doctors? Is this safe? Then I soon realized that the members’ experiences were valuable in a way that a doctor’s advice could never be- after all, there’s nobody more invested than someone who has skin in the game.
The longer I witnessed the effects of this brain tumor, the more I realized how many problems were NOT being treated and that this was due to inadequate research. When I surveyed others in the support groups, I learned that my son was not the only one suffering from these untreated symptoms. Desperate to help him, I decided to do something about it. Between my own reading of the existing literature and networking with other survivors, caregivers and researchers, I have acted as a communication bridge between patients and scientists. In my correspondence with interested researchers, I have shared our observations from the trenches. My ongoing conversations are proving fruitful and I am hopeful that my reports may shape what may take place in the lab, and someday, in the clinic.
In these last 4 ½ years, I can’t help but notice the powerful collective wisdom of ordinary people who suffer from a far-from-ordinary brain tumor. Bridging the information between the survivors and researchers, I feel like a matchmaker who has introduced two amazing people to one another. As a witness of this marriage, now I can’t wait until they have kids! Call it Grassroots Medicine or Crowdsourcing for a cure, I am now a great fan of social media. Thanks, Facebook friends- you guys rock!"
And now my "matchmaking" efforts are paying off with the discovery of oxytocin's benefit for my dear son- and I hope others may also reap these benefits!
"As a late adopter of social media, I always thought of Facebook and other such sites as places for friends, both actual and virtual, to post photos of their latest vacations or to share commentary on a current event. I never really understood the value of having a virtual community since I felt that I already had a meaningful social network amongst my real friends. All of that changed in 2011 when my then 8-year-old son was diagnosed with a rare brain tumor called craniopharyngioma.
My son had a 14-hour long brain surgery to remove the tumor and a 6-week recovery in the hospital following the surgery. The surgery saved his life but he was left to deal with the aftermath of complex medical conditions for the rest of his life.
Despite my previous lack of involvement with social media, I ended up joining an online support group and several Facebook groups for his rare condition. Besides receiving emotional support, I have also learned a tremendous amount that I would have never learned anywhere else. At first I was nervous in reading the medical advice from the other members and I thought, shouldn’t they be getting advice from their doctors? Is this safe? Then I soon realized that the members’ experiences were valuable in a way that a doctor’s advice could never be- after all, there’s nobody more invested than someone who has skin in the game.
The longer I witnessed the effects of this brain tumor, the more I realized how many problems were NOT being treated and that this was due to inadequate research. When I surveyed others in the support groups, I learned that my son was not the only one suffering from these untreated symptoms. Desperate to help him, I decided to do something about it. Between my own reading of the existing literature and networking with other survivors, caregivers and researchers, I have acted as a communication bridge between patients and scientists. In my correspondence with interested researchers, I have shared our observations from the trenches. My ongoing conversations are proving fruitful and I am hopeful that my reports may shape what may take place in the lab, and someday, in the clinic.
In these last 4 ½ years, I can’t help but notice the powerful collective wisdom of ordinary people who suffer from a far-from-ordinary brain tumor. Bridging the information between the survivors and researchers, I feel like a matchmaker who has introduced two amazing people to one another. As a witness of this marriage, now I can’t wait until they have kids! Call it Grassroots Medicine or Crowdsourcing for a cure, I am now a great fan of social media. Thanks, Facebook friends- you guys rock!"
And now my "matchmaking" efforts are paying off with the discovery of oxytocin's benefit for my dear son- and I hope others may also reap these benefits!
9) Please share your experiences with oxytocin!
I know that we are "oxytocin pioneers" in terms of my son's use of oxytocin as a replacement hormone for panhypopituitarism but I also know that we are not the only ones who have tried oxytocin for other than labor induction/lactation reasons!
As a disclaimer, I am not trying to gather data for research- I am a clinical psychologist by profession but not a researcher and I am asking others to chime in on personal experiences as a public forum to share anecdotes about oxytocin. It is possible to post anonymously so do not feel any obligation to reveal any private information about your identity,
If you (or someone you know-your child, for example) have used oxytocin for medical reasons, please feel free to share your experiences in the comments section below this posting. I am curious about the following:
1. The reasons for using oxytocin (diagnosis and target symptoms)
2. The length of time you have used oxytocin
3. The dose of oxytocin used
4. The positive therapeutic effects, if any
5. The adverse side effects, if any
6. Other comments or questions about your use of oxytocin
Thank you! I hope that our sharing this info may be of use to others who are interested in learning about the effect on oxytocin in others besides Sasha!
As a disclaimer, I am not trying to gather data for research- I am a clinical psychologist by profession but not a researcher and I am asking others to chime in on personal experiences as a public forum to share anecdotes about oxytocin. It is possible to post anonymously so do not feel any obligation to reveal any private information about your identity,
If you (or someone you know-your child, for example) have used oxytocin for medical reasons, please feel free to share your experiences in the comments section below this posting. I am curious about the following:
1. The reasons for using oxytocin (diagnosis and target symptoms)
2. The length of time you have used oxytocin
3. The dose of oxytocin used
4. The positive therapeutic effects, if any
5. The adverse side effects, if any
6. Other comments or questions about your use of oxytocin
Thank you! I hope that our sharing this info may be of use to others who are interested in learning about the effect on oxytocin in others besides Sasha!
8) Oxytocin (and related) Research Literature (updated Jan 31, 2020)
Oxytocin is primarily known as the hormone responsible for uterine contractions during labor, milk let down, and orgasm. Very few endocrinologists are aware of oxytocin's effects on appetite and social motivation or in using oxytocin as a replacement hormone for people with panhypopituitarism. This may largely be due to the fact that there is almost no research (as of this writing in 2016) on its use with people with panhypopituitarism. Naomi Cook has acted as a pioneer in her experimental use of oxytocin with her cranio daughter. She published her case report in a recent edition of the Journal of Pediatric Endocrinology and Metabolism: Parent observed neuro-behavioral and pro-social improvements with oxytocin following surgical resection of craniopharyngioma
Naomi's paper is the first of its kind and I am hopeful that the nascent awareness of oxytocin's effectiveness in arenas other than those pertaining to reproduction and birth will spark the interest of endocrinologists. Basic research (on animal models and humans) has shown oxytocin's appetite regulatory effects and research in the PWS and autism communities have shown some benefit as well in the reduction of anxiety and in the improvement of social interactions. In my last year of reading the research literature on oxytocin, I have collected a few articles that may be of interest to those of you who are considering oxytocin replacement or who are medical professionals who are considering its use for your patients. Please see this non-exhaustive list of articles I have selected for your reading. Due to time constraints and the priority of this blog's subject, please note that most of my time and energy goes to updating the research articles pertaining to the categories "A" and "B".
Read the Hope for HO case report published to the JCEM in February, 2018 and see here for the articles which have cited the case report to date.
A) Oxytocin and energy/metabolism/obesity:
1. Contributions of central and peripheral oxytocin actions to energy balance
2. Role of oxytocin in energy metabolism
3. Treatment of obesity and diabetes using oxytocin or analogs in patients and mouse models
4. Oxytocin reduces reward-driven food intake in humans
5. Role of oxytocin signaling in the reduction of body weight
6. Chronic oxytocin reduces body weight, inhibits food intake in monkeys
7. Peripheral oxytocin activates vagal afferent neurons to suppress feeding in normal and leptin-resistant mice: a route for ameliorating hyperphagia and obesity
8. Oxytocin as feeding inhibitor: Maintaining homeostasis in consummatory behavior
9. Oxytocin as a novel treatment for diabetes and obesity
10. Oxytocin’s inhibitory effect on food intake is stronger in obese than normal-weight men
11. Chronic oxytocin administration as a treatment against impaired leptin signaling or leptin resistance in obesity
12. Reduced circulating oxytocin and High-Molecular-Weight adiponectin are risk factors for metabolic syndrome
13. Deconstructing a neural circuit for hunger
14. Peripheral oxytocin suppresses food intake and reduces obesity in rats
15. Leptin activates oxytocin which mediates weight loss
16. Oxytocin deficiency and implications for the Food-Addiction Construct
17. Serum Irisin and oxytocin levels predict metabolic parameters in children
18. The roles of oxytocin in stress, energy metabolism and social behavior
19. Oxytocin and potential benefits for obesity treatment
20. Central oxytocin and food intake- focus on macronutrient-driven reward
21. Leptin activates oxytocin neurons of the PVN in control and obese rodents
22. Mechanisms of the anti-obesity effects of oxytocin in diet-induced obese rats
23. Pharmacotherapy of obesity: available medications and drugs under investigation
24 The anorexigenic neural pathways of oxytocin and their clinical implication
25. Oxytocin curbs caloric intake via food specific increases in the activity of brain areas that process reward and establish cognitive control
26. Oxytocin participates on the effects of vasoactive intestinal peptide on food intake and plasma parameters
27. Caffeine inhibits hypothalamic A1R to excite oxytocin neuron to ameliorate dietary obesity in mice
28. Oxytocin improves Beta cell responsivity and glucose tolerance in healthy men
29. Oxytocin modifies metabolic changes and artherosclerosis in rat model of diet induced obesity
30. Effects of intranasal oxytocin on the blood oxygenation level-dependent signal in food motivation and cognitive control in overweight and obese men
31. Oxytocin- the sweet hormone?
32. Central oxytocin and energy balance; more than feelings
33. Intranasal oxytocin reduces weight gain in diet-induced obese prairie voles
34. Oxytocin differently affects sucrose seeking and taking between male and female rats
35. Effects of chronic oxytocin administration and diet composition on oxytocin and vasopressin 1a receptor binding in the rat brain
36. The anorexigenic neural pathways of oxytocin and their clinical implications
37. The relationship between oxytocin, dietary intake and feeding: a systematic study and meta-analysis study of mice and rats
38. Oxytocin in metabolic homeostasis: implications for obesity and diabetes management
39. Oxytocin reduces the functional connectivity between brain regions of eating behavior in men with overweight and obesity
40. Variable oxytocin levels in humans with different degrees of obesity and impact of gastric bypass surgery
41. Circulating oxytocin is genetically determined and associated with obesity and impaired glucose tolerance
42. Oxytocin and vasopressin systems in obesity and metabolic health
43. Oxytocin treatment reduced food intake and body fat and ameliorated obesity in ovariectomized female rats
44. Oxytocin administration alleviates acute but not chronic leptin resistance of diet-induced obese mice
45. Sex differences and estrous influences on oxytocin control of food intake
46. The metabolic effects of oxytocin (RECOMMENDED REVIEW ARTICLE)
47. Is weight status associated with peripheral levels of oxytocin? A pilot study in healthy women
48. Oxytocin regulates body composition (including body fat)
49. The OXTR polymorphism stratified the correlation of oxytocin and glucose homeostasis in non-diabetic subjects
50. The role of oxytocin in regulation of appetitive behaviour, body weight and glucose homeostasis (RECOMMENDED REVIEW ARTICLE)
51. Relay of peripheral oxytocin to central oxytocin neurons via vagal afferents for regulating feeding
52. Intranasal oxytocin fails to acutely improve glucose metabolism in obese men
53. Associations of oxytocin with metabolic parameters in obese women of childbearing age
54. New metabolic influencer on oxytocin release: the ghrelin
55. Effect of oxytocin on hunger discrimination
56. OR20-2 Oxytocin significantly attenuates the functional connectivity between food motivation brain areas in overweight and obese men exposed to high caloric food images
57. Appetite regulation: hormones, peptides, and neurotransmitters and their role in obesity
B) Hypothalamic Obesity- Craniopharyngioma Treatment:
1. Pathophysiology of hypothalamic obesity and treatment recommendations: Review article (RECOMMENDED REVIEW ARTICLE)
2. Hypothalamic Obesity 4- year retrospective study from the HO Registry
3. Interventions for the treatment of craniopharyngioma-related hypothalamic obesity- a systematic review (RECOMMENDED REVIEW ARTICLE)
4. Hypothalamic obesity treatment demands thinking outside the box (letter to the editor to Obesity)
5. Adamantinomatous Craniopharyngioma: genomics, radiologic findings, clinical, and prognosis
6. Management of endocrine disease in childhood-onset craniopharyngioma review
7. Hypothalamic Obesity- Prologue and Promise (RECOMMENDED REVIEW ARTICLE)
8. Eating behaviour and oxytocin in patients with childhood‐onset craniopharyngioma and different grades of hypothalamic involvement
9. Oxytocin in survivors of craniopharyngioma
C) Oxytocin and bone density:
1. Oxytocin treats diabetes and osteoporosis
2. Oxytocin controls bone and fat mass
3. Oxytocin and the loss of fat and the gain of bone
4. Oxytocin and its relationship to body composition, bone mineral density, and hip geometry across the weight spectrum
5. Oxytocin regulates body composition (including bone mass)
D) Oxytocin and PWS:
1. Current and emerging therapies for managing hyperphagia and obesity in Prader‐Willi syndrome: a narrative review
2. Genetic obesity syndromes
3. PWS and Williams Syndrome
4. PWS and compulsive behaviors
5. Oxytocin improves many problem areas in children with PWS
6. The potential of oxytocin for the treatment of hyperphagia in PWS
7. Is intranasal oxytocin effective in improving disruptive behaviors in individuals with PWS?
8. Obsessive-compulsive features in PWS
E) Oxytocin and autism/social behavior/motivation:
1. Oxytocin and social motivation
2. Oxytocin, vasopressin and social behavior
3. Oxytocin plasma levels in autistic children
1. Diabetes insipidus and obsessional neuroses case examples:
2. Oxytocin reduces repetitive behaviors in adults with autism
3. Intranasal oxytocin improves Obsessive Compulsive Disorder
4. Oxytocin in obsessive compulsive behavior
5. Oxytocin reduces stress and anxiety behavior in rats
6. Oxytocin receptor knockout prairie voles generated by CRISPR/Cas9 editing show reduced preference for social novelty and exaggerated repetitive behaviors
7. Hypothalamic AgRP neurons drive stereotypic (compulsive) behaviors beyond feeding
8. Intranasal oxytocin attenuates ACTH stress response in monkeys
9. Stress increases oxytocin release with the hypothalamic PVN
10. Low oxytocin levels and psychopathology in men with hypopituitarism with diabetes insipidus
G) Miscellaneous Oxytocin:
1. Oxytocin and social bonding
3. Review of safety, side effects, and subjective reactions to oxytocin in human research
4. Translating basic science of oxytocin to pharmacotherapy
5. Non-social function of hypothalamic oxytocin
6. Oxytocin therapy and hypopituitarism
7. Chronic oxytocin administration as a tool for investigation and treatment: A cross-disciplinary systematic review
H) Opiate antagonists and impact on hedonic-reward eating:
1. Naltrexone/Buproprion for weight loss
2. Naltrexone for the treatment of obesity: review and update
3. Opposing neural effects of naltrexone on food reward and aversion: implications for the treatment of obesity
4. Review on opioid connection to food intake
5. Opioid antagonists reduce sugar intake
6. Naltrexone puts "brakes on the drive to eat"
7. Animal studies suggest drugs for addiction may also treat overeatting
8. Neurobiology of food addiction
9. Neurobiological underpinnings of obesity and binge eating (food addiction model)
10. Opioid receptors enhance hedonic eating
Please continue to check back here as I update this list periodically as I find relevant papers.
Naomi's paper is the first of its kind and I am hopeful that the nascent awareness of oxytocin's effectiveness in arenas other than those pertaining to reproduction and birth will spark the interest of endocrinologists. Basic research (on animal models and humans) has shown oxytocin's appetite regulatory effects and research in the PWS and autism communities have shown some benefit as well in the reduction of anxiety and in the improvement of social interactions. In my last year of reading the research literature on oxytocin, I have collected a few articles that may be of interest to those of you who are considering oxytocin replacement or who are medical professionals who are considering its use for your patients. Please see this non-exhaustive list of articles I have selected for your reading. Due to time constraints and the priority of this blog's subject, please note that most of my time and energy goes to updating the research articles pertaining to the categories "A" and "B".
Read the Hope for HO case report published to the JCEM in February, 2018 and see here for the articles which have cited the case report to date.
A) Oxytocin and energy/metabolism/obesity:
1. Contributions of central and peripheral oxytocin actions to energy balance
2. Role of oxytocin in energy metabolism
3. Treatment of obesity and diabetes using oxytocin or analogs in patients and mouse models
4. Oxytocin reduces reward-driven food intake in humans
5. Role of oxytocin signaling in the reduction of body weight
6. Chronic oxytocin reduces body weight, inhibits food intake in monkeys
7. Peripheral oxytocin activates vagal afferent neurons to suppress feeding in normal and leptin-resistant mice: a route for ameliorating hyperphagia and obesity
8. Oxytocin as feeding inhibitor: Maintaining homeostasis in consummatory behavior
9. Oxytocin as a novel treatment for diabetes and obesity
10. Oxytocin’s inhibitory effect on food intake is stronger in obese than normal-weight men
11. Chronic oxytocin administration as a treatment against impaired leptin signaling or leptin resistance in obesity
12. Reduced circulating oxytocin and High-Molecular-Weight adiponectin are risk factors for metabolic syndrome
13. Deconstructing a neural circuit for hunger
14. Peripheral oxytocin suppresses food intake and reduces obesity in rats
15. Leptin activates oxytocin which mediates weight loss
16. Oxytocin deficiency and implications for the Food-Addiction Construct
17. Serum Irisin and oxytocin levels predict metabolic parameters in children
18. The roles of oxytocin in stress, energy metabolism and social behavior
19. Oxytocin and potential benefits for obesity treatment
20. Central oxytocin and food intake- focus on macronutrient-driven reward
21. Leptin activates oxytocin neurons of the PVN in control and obese rodents
22. Mechanisms of the anti-obesity effects of oxytocin in diet-induced obese rats
23. Pharmacotherapy of obesity: available medications and drugs under investigation
24 The anorexigenic neural pathways of oxytocin and their clinical implication
25. Oxytocin curbs caloric intake via food specific increases in the activity of brain areas that process reward and establish cognitive control
26. Oxytocin participates on the effects of vasoactive intestinal peptide on food intake and plasma parameters
27. Caffeine inhibits hypothalamic A1R to excite oxytocin neuron to ameliorate dietary obesity in mice
28. Oxytocin improves Beta cell responsivity and glucose tolerance in healthy men
29. Oxytocin modifies metabolic changes and artherosclerosis in rat model of diet induced obesity
30. Effects of intranasal oxytocin on the blood oxygenation level-dependent signal in food motivation and cognitive control in overweight and obese men
31. Oxytocin- the sweet hormone?
32. Central oxytocin and energy balance; more than feelings
33. Intranasal oxytocin reduces weight gain in diet-induced obese prairie voles
34. Oxytocin differently affects sucrose seeking and taking between male and female rats
35. Effects of chronic oxytocin administration and diet composition on oxytocin and vasopressin 1a receptor binding in the rat brain
36. The anorexigenic neural pathways of oxytocin and their clinical implications
37. The relationship between oxytocin, dietary intake and feeding: a systematic study and meta-analysis study of mice and rats
38. Oxytocin in metabolic homeostasis: implications for obesity and diabetes management
39. Oxytocin reduces the functional connectivity between brain regions of eating behavior in men with overweight and obesity
40. Variable oxytocin levels in humans with different degrees of obesity and impact of gastric bypass surgery
41. Circulating oxytocin is genetically determined and associated with obesity and impaired glucose tolerance
42. Oxytocin and vasopressin systems in obesity and metabolic health
43. Oxytocin treatment reduced food intake and body fat and ameliorated obesity in ovariectomized female rats
44. Oxytocin administration alleviates acute but not chronic leptin resistance of diet-induced obese mice
45. Sex differences and estrous influences on oxytocin control of food intake
46. The metabolic effects of oxytocin (RECOMMENDED REVIEW ARTICLE)
47. Is weight status associated with peripheral levels of oxytocin? A pilot study in healthy women
48. Oxytocin regulates body composition (including body fat)
49. The OXTR polymorphism stratified the correlation of oxytocin and glucose homeostasis in non-diabetic subjects
50. The role of oxytocin in regulation of appetitive behaviour, body weight and glucose homeostasis (RECOMMENDED REVIEW ARTICLE)
51. Relay of peripheral oxytocin to central oxytocin neurons via vagal afferents for regulating feeding
52. Intranasal oxytocin fails to acutely improve glucose metabolism in obese men
53. Associations of oxytocin with metabolic parameters in obese women of childbearing age
54. New metabolic influencer on oxytocin release: the ghrelin
55. Effect of oxytocin on hunger discrimination
56. OR20-2 Oxytocin significantly attenuates the functional connectivity between food motivation brain areas in overweight and obese men exposed to high caloric food images
57. Appetite regulation: hormones, peptides, and neurotransmitters and their role in obesity
B) Hypothalamic Obesity- Craniopharyngioma Treatment:
1. Pathophysiology of hypothalamic obesity and treatment recommendations: Review article (RECOMMENDED REVIEW ARTICLE)
2. Hypothalamic Obesity 4- year retrospective study from the HO Registry
3. Interventions for the treatment of craniopharyngioma-related hypothalamic obesity- a systematic review (RECOMMENDED REVIEW ARTICLE)
4. Hypothalamic obesity treatment demands thinking outside the box (letter to the editor to Obesity)
5. Adamantinomatous Craniopharyngioma: genomics, radiologic findings, clinical, and prognosis
6. Management of endocrine disease in childhood-onset craniopharyngioma review
7. Hypothalamic Obesity- Prologue and Promise (RECOMMENDED REVIEW ARTICLE)
8. Eating behaviour and oxytocin in patients with childhood‐onset craniopharyngioma and different grades of hypothalamic involvement
9. Oxytocin in survivors of craniopharyngioma
C) Oxytocin and bone density:
1. Oxytocin treats diabetes and osteoporosis
2. Oxytocin controls bone and fat mass
3. Oxytocin and the loss of fat and the gain of bone
4. Oxytocin and its relationship to body composition, bone mineral density, and hip geometry across the weight spectrum
5. Oxytocin regulates body composition (including bone mass)
D) Oxytocin and PWS:
1. Current and emerging therapies for managing hyperphagia and obesity in Prader‐Willi syndrome: a narrative review
2. Genetic obesity syndromes
3. PWS and Williams Syndrome
4. PWS and compulsive behaviors
5. Oxytocin improves many problem areas in children with PWS
6. The potential of oxytocin for the treatment of hyperphagia in PWS
7. Is intranasal oxytocin effective in improving disruptive behaviors in individuals with PWS?
8. Obsessive-compulsive features in PWS
E) Oxytocin and autism/social behavior/motivation:
1. Oxytocin and social motivation
2. Oxytocin, vasopressin and social behavior
3. Oxytocin plasma levels in autistic children
4. Oxytocin and prosocial effects and clinical evidence for its therapeutic potential
5. Oxytocin and social support suppress cortisol and subjective stress
6. Oxytocin enhances emotional empathy across cultures
7. Oxytocin and neurocognitive domains in patients with hypopituitarism
8. Loss of Maged1 results in obesity, deficits of social interactions, impaired sexual behavior and severe alteration of mature oxytocin production in the hypothalamus
9. The multifarious oxytocin
10. Behavioral effects of multiple-dose oxytocin treatment in autism: a randomized, placebo-controlled trial with long-term follow-up
F) Oxytocin and anxiety/compulsive/psychopathological behaviors:5. Oxytocin and social support suppress cortisol and subjective stress
6. Oxytocin enhances emotional empathy across cultures
7. Oxytocin and neurocognitive domains in patients with hypopituitarism
8. Loss of Maged1 results in obesity, deficits of social interactions, impaired sexual behavior and severe alteration of mature oxytocin production in the hypothalamus
9. The multifarious oxytocin
10. Behavioral effects of multiple-dose oxytocin treatment in autism: a randomized, placebo-controlled trial with long-term follow-up
1. Diabetes insipidus and obsessional neuroses case examples:
2. Oxytocin reduces repetitive behaviors in adults with autism
3. Intranasal oxytocin improves Obsessive Compulsive Disorder
4. Oxytocin in obsessive compulsive behavior
5. Oxytocin reduces stress and anxiety behavior in rats
6. Oxytocin receptor knockout prairie voles generated by CRISPR/Cas9 editing show reduced preference for social novelty and exaggerated repetitive behaviors
7. Hypothalamic AgRP neurons drive stereotypic (compulsive) behaviors beyond feeding
8. Intranasal oxytocin attenuates ACTH stress response in monkeys
9. Stress increases oxytocin release with the hypothalamic PVN
10. Low oxytocin levels and psychopathology in men with hypopituitarism with diabetes insipidus
G) Miscellaneous Oxytocin:
1. Oxytocin and social bonding
3. Review of safety, side effects, and subjective reactions to oxytocin in human research
4. Translating basic science of oxytocin to pharmacotherapy
5. Non-social function of hypothalamic oxytocin
6. Oxytocin therapy and hypopituitarism
7. Chronic oxytocin administration as a tool for investigation and treatment: A cross-disciplinary systematic review
H) Opiate antagonists and impact on hedonic-reward eating:
1. Naltrexone/Buproprion for weight loss
2. Naltrexone for the treatment of obesity: review and update
3. Opposing neural effects of naltrexone on food reward and aversion: implications for the treatment of obesity
4. Review on opioid connection to food intake
5. Opioid antagonists reduce sugar intake
6. Naltrexone puts "brakes on the drive to eat"
7. Animal studies suggest drugs for addiction may also treat overeatting
8. Neurobiology of food addiction
9. Neurobiological underpinnings of obesity and binge eating (food addiction model)
10. Opioid receptors enhance hedonic eating
Please continue to check back here as I update this list periodically as I find relevant papers.
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