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| Sasha "after" on Nov 30, 2016
(I put the sticker on his face to protect his privacy)
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| Sasha "before" on July 29, 2016 |
I think his BMI is now lower than mine! Time to get myself some oxytocin! ; )
Wednesday, November 30, 2016
55) Photos (before and after) of Sasha- now more svelte!
I think his BMI is now lower than mine! Time to get myself some oxytocin! ; )
Thursday, November 24, 2016
54) Gratitude this Thanksgiving
What better time than Thanksgiving to reflect upon the many things for which I am grateful. We have had six months on oxytocin and we have noticed the changes in Sasha as well as the life style changes we have enjoyed in the last few months. Reminiscing about the "old days" has made me appreciate how much things have changed for the better!
I'm grateful for peace in the kitchen.
Old days: Whenever I was in the kitchen to prepare a meal, Sasha would insert himself and insist on helping. I knew that his desire to help was fueled by his desire to be near food so that he could sneak it into his mouth or pockets. When I allowed him to help cook, we would often get into an argument because of the tension I felt with his frequent attempts to sneak food and my attempts to monitor and control him. For this reason, sometimes I just wasn't in the mood to let him cook alongside me or preferred for him to occupy himself with something else he needed to do (homework, for example). Cajoling or asking him nicely to leave was not an option: it was nearly impossible to get him to leave and during these times, I would have to order him to leave. Despite my order, he would refuse to do so and would end up standing at the perimeter of the kitchen, frozen like a statue. It was a very sad sight to see him physically unable to tear himself away from the kitchen even after I ordered him to leave me alone. Overall, I would say that in the old days, Sasha would not be able to stay away from the kitchen if there was food preparation happening and no activity, person, task, request, etc. could compete with the allure of the kitchen, the promised land of food.
Nowadays: I am able to cook in the kitchen in peace. Sasha still offers to help me cook from time to time but he is actually capable of staying away from the kitchen now while he is preoccupied with another activity in his room (e.g.: homework, sorting his Magic the Gathering cards). When we cook together now there is much less tension/conflict and much less distrust on my part. I am much more relaxed and happy in the kitchen and so is Sasha.
I am grateful for more "open borders" in the kitchen.
Old days: All tempting food was locked up at all times, By tempting food, I mean the food that Sasha would likely eat- (we have never had to lock up canned food or raw ingredients like flour because he wouldn't eat it). We felt constrained by the constant vigilance around food and could not afford to let down our guard if the food cabinets or fridge were unlocked, even for a minute. In fact, Sasha used to check the kitchen on a regular basis- in the middle of the night when he awoke and whenever he was passing through, just in case someone was sloppy and left out some food or forgot to lock up.
Nowadays: We have continued to keep the snack cabinet locked up because it contains the most tempting foods for Sasha (nuts, his go-to snack these days) and have known that he is still "weak" when it comes to his temptations to sneak them and store them for later consumption (yes, much like a squirrel storing his nuts). However, I have been noticing that he is much less distracted by the fridge and for the last two days, I have been keeping the fridge unlocked all day long! To my surprise, Sasha either doesn't notice it (which is a good sign that he is not entering the kitchen to check) or he is not bothered by it. In fact, even with the fridge unlocked, I have noticed that he continues to go about his business and is able to ignore the kitchen, asking for snacks at appropriate times. We will keep up the unlocked fridge and keep a sideways eye on him during this prolonged exposure and see how it goes...
I'm grateful for Sasha's improved satiety and ability to self-monitor his food intake.
Old days: Sasha would eat all of his food and would often express desire for more. We had strict rules about "no seconds" (except with salad/veggies) so he eventually learned not to ask but it was obvious that he often wanted more. He used to ask for his snack on a more urgent basis and I had the heartbreaking job of often telling him "no" he could not have more to eat because he had already eaten or he needed to wait until the appropriate time to eat.
Nowadays: Sasha self-regulates much more often- feeling full and stopping before he eats everything on his plate. Now, it is not unusual for him to not finish everything on his plate, even when it is food that he really likes (example- HEFY- Half-Eaten-Frozen-Yogurt). We have to be careful, of course, to wonder if his satiety is due to extra food he has snuck that day, but we do periodic searches of his room and are finding evidence of snuck food on a much less frequent basis these days. We ask that his case manager teacher at school give us reports on when he has attempted to sneak or has snuck food. We used to hear reports on a regular basis (several incidents every week) and now, these reports are much more seldom. It certainly appears that the decreased intensity of his appetite and his increased satiety are true when we observe his ability to self-monitor and stop eating because he is full.
I'm grateful for stable electrolytes.
Old days: Because Sasha has Diabetes Insipidus with absent thirst, we have relied upon frequent weighings and weekly sodium checks at the lab to monitor his electrolytes. With stable weight, this is an excellent way to manage this very challenging condition. Whenever he is light (according to the best estimation of his weight with a Na level of 140), we just had him drink water to the desired weight. Whenever he is heavy, we let him urinate out the excess water and try to keep him at the desired weight. Every week for the last 5 years, we have checked his sodium and approximately 75-90% of the time, his Na levels were too high. In other words, we could not accurately calculate his Na levels based on the desired weight from the previous week because he was gaining weight every week (for years). His high sodium levels caused him to be excessively fatigued and to have headaches/dizziness when his dehydration was more severe.
Nowadays: Sasha's weight has been decreasing or stable. It is a relief to take him to the lab and to find that his sodium levels are normal! With the gradual decrease of his weight, we can afford to err on the side of allowing him to be a little lighter than the previous week's weight and still believe that he won't be dehydrated. In the last 3 months on oxytocin, we have had a record of all sodium results WNL with the exception of one that was too low (when he lost a lot of weight in one week) and one that was too high (when he gained weight after Halloween). As a result of these stable electrolytes, Sasha's energy has been much better and his quality of life has improved drastically with this increased energy.
There may be other changes I am not noting here but you get the gist. Life is definitely better post-oxytocin/Naltrexone. To those of you who are also hoping for an improved quality of life with oxytocin, it is possible with the oxytocin studies underway.
Last but not least, on my gratitude list are also the people who have supported me in this experiment: Bill (my husband), Dr. Friedman (Sasha's oxytocin-prescribing endo), Dr. Fan (Sasha's regular endo), Dr. Miller (cheerleader and oxytocin consultant), Nurse Naomi (oxytocin pioneer and cranio mum extraordinaire), Dr. King (Sasha's psychotherapist), the other endo researchers who have read and taken an interest in oxytocin as a replacement hormone, and of course, all the readers (you!) who have kept up with the blog and have shared the info with others to spread the word on oxytocin.
Thank you, all. Have a wonderful Thanksgiving and if you don't celebrate Thanksgiving, have a great Thursday! (as quoted by one of my favorite cranio survivors, Trevor).
Monday, November 14, 2016
53) Demi-anniversary summary and discussion of findings
Today marks the demi-anniversary of the oxytocin experiment. It's hard to believe it has already been 6 months since we started his first dose. To mark this occasion, I thought I might review and see if I can make any meaningful conclusions (so far) of this experiment. Thanks to all of you readers who have been with us on this journey from the beginning. To those of you who began reading this blog more recently, I will summarize the 6 months as succinctly as I can and focus on my findings.
As you may recall, the goals of this experiment were to see if oxytocin might:
1) reduce my son's intense appetite/food obsessions
2) reduce his food seeking behaviors
3) increase his motivation to socialize with his peers and to make some friends
Since I am merely a mom doing an experiment in my make-shift "home laboratory," my findings are unfortunately "mushy" and are due to my lack of pre-test data, the unreliability of the data, and the lack of controls in this experiment. Not exactly a water-tight experiment, I know! For what it's worth, this is how I would answer my research questions after these 6 months of using oxytocin on the above three goals.
(1) Did my son's intense appetite and food obsessions decrease since beginning oxytocin?
Answer: Yes, probably, and much of the time.
Since he has been on (the optimal dose known to us of) oxytocin, he has been able to leave food on his plate whereas before oxytocin, he almost never left food unfinished. On the other hand, there have also times when his appetite still appeared quite hearty and he finished all of the food he was offered. I cannot accurately say if the reductions we have seen are "statistically significant" since (a) I did not attempt to measure the number of calories/foods he ingested before and after he started oxytocin and (b) I am not able to accurately measure his appetite and thoughts about food (an internal and private experience that only he can know). It is also important to note that there have been times we did NOT see any reductions in his appetite and food obsessions because the HO Monster reared his ugly head. I regret not tracking the frequency of these episodes before and after beginning oxytocin so I can't say with any empirical evidence, alas, but both my husband and I agree that the frequency of his meltdowns over food (what we attribute to his food "intensity" or "obsessiveness") have decreased overall since starting oxytocin.
(2) Did my son's food seeking behaviors (stealing food, sneaking food) decrease since beginning oxytocin?
Answer: Hard to answer, maybe a little bit, but no, not enough to make a difference.
As you may recall, I have struggled a great deal with Sasha as a unreliable reporter of his experiences in this experiment. Due to his HO problem, his hunger and desire to acquire food have precluded his ability and willingness to be forthcoming about his food sneaking behaviors. Very recently, I figured out that our reward system was only incentivizing him to become more adroit at sneaking and lying. In reality, the only way we know if he sneaks food is when he is caught. There have only been a handful of times in the last 5 years when he volunteers that he snuck food or admits right away when confronted about sneaking food. Most of the time, he has had a habit of telling us bold-faced lies about his innocence, even when there was hard evidence to the contrary. Since our catching him after he sneaks is NOT an accurate way of measuring the true frequency of these behaviors, it is too hard a question to answer. Additionally, even if we did use "number of times caught" as the variable to measure, we did not track the frequency he was caught before oxytocin versus after oxytocin. Most importantly, the fact that he was still being caught at all proves to be problematic. Even if we could estimate that his tendency to steal food would only occur 10% of the time, we still cannot risk leaving him unsupervised in a store or in someone's home for fear that he will take something that does not belong to him. Shoplifting one time is still one time too many.
(3) Did my son's motivation to seek out peer social interactions/friendships increase since beginning oxytocin?
Answer: Yes.
Making friends takes time, of course, so I never expected Sasha to suddenly become surrounded by friends just because of oxytocin. However, he has definitely shown more interest in connecting with peers, thanks to his interest in playing Magic the Gathering cards. Before oxytocin, his interests were (1) eating food, (2) cooking food, (3) shopping for food, (4) talking about food, etc. Oh yeah, I forgot to include his previous obsessions for collecting (useless, to me) things. Now, he has expanded his interests into a hobby of collecting and playing these cards. Almost every day at school lunchtime, he hangs with other kids and plays Magic. On the weekends, he goes over to a kid's house for the "Magic Club" where they play from 3-5 PM for a standing game every Saturday. We were thrilled for him to be invited to this club- nervous that he might try to take another kid's card and blow his chances at being invited back but so far, so good. As for our worries about his overeating at the kid's home, we just decided to let go. The family who hosts knows about Sasha's issues and we know that they serve healthy snacks at their house. As far as inviting one of these kids to our home, we know he has exchanged phone numbers with a couple of kids at school. Is he wanting a kid as best friend or appearing to become emotionally attached to a kid? Well, no, but he's a 13-year-old boy with no previous experience with peer friendship attachments so that would be highly unlikely anyway. For now, we are happy he has something social to do every day at lunch and every Saturday afternoon! We are hoping that it is a matter of time before he invites someone or gets invited by someone to socialize on the weekends.
In addition to examining the results of my three main experimental questions, the *bonus* finding was that oxytocin appears to have improved his metabolism because Sasha has been steadily losing weight. Before oxytocin, Sasha was steadily gaining weight. Even in the first three months of using oxytocin (before we started the daily dose of 6 iu), he was still gaining weight and this was in part due to his secret chocolate binging and low thyroid levels. We have since improved in our home food security and raised his thyroid levels. At any rate, we are very pleased that oxytocin seems to have improved his metabolism and are impressed that he seems to be losing weight with a BMI (just under 25) at the lowest ever since brain surgery!
In addressing question #1 above, his weight loss may be partly attributed to his decreased appetite and reduction in food intake but... in all honesty, Sasha has been on a low-carbohydrate food plan but was never on a low calorie diet and even when he was not finishing all of his food, he was still eating a moderate amount including high calorie, high fat foods (bacon...yum). From what I know about losing weight, it is NOT easy to lose weight and much, much harder for those who have HO. So... I cannot help but think that oxytocin was doing something to speed up his metabolism. His metabolic health has improved overall and he appears to be less sensitive to insulin crashes after ingesting carbs/sugar compared to before oxytocin. In December during the holiday break, we will have Sasha get another glucose tolerance test WITH insulin levels to see if he is, in fact, no longer hypersecreting insulin.
Going forward:
As far as dealing with the food sneaking problem, we are trying out Naltrexone to see if it will help Sasha decrease his temptations to food seek. It is definitely too early to draw any conclusions but I am feeling hopeful based on how he seemed last week. I am also changing my approach of how we motivate and reward him so I am hoping that my new system (rewarding him for keeping a private daily log on his appetite, temptations, etc.) will be more effective in encouraging him to keep an honest record of his observations. Additionally, I will be keeping track of my observations with him with my own daily log and we will continue with the exposure hierarchy.
Phew, it's been a lot of work and there's a lot more to do but so far, I still have hope!
As you may recall, the goals of this experiment were to see if oxytocin might:
1) reduce my son's intense appetite/food obsessions
2) reduce his food seeking behaviors
3) increase his motivation to socialize with his peers and to make some friends
Since I am merely a mom doing an experiment in my make-shift "home laboratory," my findings are unfortunately "mushy" and are due to my lack of pre-test data, the unreliability of the data, and the lack of controls in this experiment. Not exactly a water-tight experiment, I know! For what it's worth, this is how I would answer my research questions after these 6 months of using oxytocin on the above three goals.
(1) Did my son's intense appetite and food obsessions decrease since beginning oxytocin?
Answer: Yes, probably, and much of the time.
Since he has been on (the optimal dose known to us of) oxytocin, he has been able to leave food on his plate whereas before oxytocin, he almost never left food unfinished. On the other hand, there have also times when his appetite still appeared quite hearty and he finished all of the food he was offered. I cannot accurately say if the reductions we have seen are "statistically significant" since (a) I did not attempt to measure the number of calories/foods he ingested before and after he started oxytocin and (b) I am not able to accurately measure his appetite and thoughts about food (an internal and private experience that only he can know). It is also important to note that there have been times we did NOT see any reductions in his appetite and food obsessions because the HO Monster reared his ugly head. I regret not tracking the frequency of these episodes before and after beginning oxytocin so I can't say with any empirical evidence, alas, but both my husband and I agree that the frequency of his meltdowns over food (what we attribute to his food "intensity" or "obsessiveness") have decreased overall since starting oxytocin.
(2) Did my son's food seeking behaviors (stealing food, sneaking food) decrease since beginning oxytocin?
Answer: Hard to answer, maybe a little bit, but no, not enough to make a difference.
As you may recall, I have struggled a great deal with Sasha as a unreliable reporter of his experiences in this experiment. Due to his HO problem, his hunger and desire to acquire food have precluded his ability and willingness to be forthcoming about his food sneaking behaviors. Very recently, I figured out that our reward system was only incentivizing him to become more adroit at sneaking and lying. In reality, the only way we know if he sneaks food is when he is caught. There have only been a handful of times in the last 5 years when he volunteers that he snuck food or admits right away when confronted about sneaking food. Most of the time, he has had a habit of telling us bold-faced lies about his innocence, even when there was hard evidence to the contrary. Since our catching him after he sneaks is NOT an accurate way of measuring the true frequency of these behaviors, it is too hard a question to answer. Additionally, even if we did use "number of times caught" as the variable to measure, we did not track the frequency he was caught before oxytocin versus after oxytocin. Most importantly, the fact that he was still being caught at all proves to be problematic. Even if we could estimate that his tendency to steal food would only occur 10% of the time, we still cannot risk leaving him unsupervised in a store or in someone's home for fear that he will take something that does not belong to him. Shoplifting one time is still one time too many.
(3) Did my son's motivation to seek out peer social interactions/friendships increase since beginning oxytocin?
Answer: Yes.
Making friends takes time, of course, so I never expected Sasha to suddenly become surrounded by friends just because of oxytocin. However, he has definitely shown more interest in connecting with peers, thanks to his interest in playing Magic the Gathering cards. Before oxytocin, his interests were (1) eating food, (2) cooking food, (3) shopping for food, (4) talking about food, etc. Oh yeah, I forgot to include his previous obsessions for collecting (useless, to me) things. Now, he has expanded his interests into a hobby of collecting and playing these cards. Almost every day at school lunchtime, he hangs with other kids and plays Magic. On the weekends, he goes over to a kid's house for the "Magic Club" where they play from 3-5 PM for a standing game every Saturday. We were thrilled for him to be invited to this club- nervous that he might try to take another kid's card and blow his chances at being invited back but so far, so good. As for our worries about his overeating at the kid's home, we just decided to let go. The family who hosts knows about Sasha's issues and we know that they serve healthy snacks at their house. As far as inviting one of these kids to our home, we know he has exchanged phone numbers with a couple of kids at school. Is he wanting a kid as best friend or appearing to become emotionally attached to a kid? Well, no, but he's a 13-year-old boy with no previous experience with peer friendship attachments so that would be highly unlikely anyway. For now, we are happy he has something social to do every day at lunch and every Saturday afternoon! We are hoping that it is a matter of time before he invites someone or gets invited by someone to socialize on the weekends.
In addition to examining the results of my three main experimental questions, the *bonus* finding was that oxytocin appears to have improved his metabolism because Sasha has been steadily losing weight. Before oxytocin, Sasha was steadily gaining weight. Even in the first three months of using oxytocin (before we started the daily dose of 6 iu), he was still gaining weight and this was in part due to his secret chocolate binging and low thyroid levels. We have since improved in our home food security and raised his thyroid levels. At any rate, we are very pleased that oxytocin seems to have improved his metabolism and are impressed that he seems to be losing weight with a BMI (just under 25) at the lowest ever since brain surgery!
In addressing question #1 above, his weight loss may be partly attributed to his decreased appetite and reduction in food intake but... in all honesty, Sasha has been on a low-carbohydrate food plan but was never on a low calorie diet and even when he was not finishing all of his food, he was still eating a moderate amount including high calorie, high fat foods (bacon...yum). From what I know about losing weight, it is NOT easy to lose weight and much, much harder for those who have HO. So... I cannot help but think that oxytocin was doing something to speed up his metabolism. His metabolic health has improved overall and he appears to be less sensitive to insulin crashes after ingesting carbs/sugar compared to before oxytocin. In December during the holiday break, we will have Sasha get another glucose tolerance test WITH insulin levels to see if he is, in fact, no longer hypersecreting insulin.
Going forward:
As far as dealing with the food sneaking problem, we are trying out Naltrexone to see if it will help Sasha decrease his temptations to food seek. It is definitely too early to draw any conclusions but I am feeling hopeful based on how he seemed last week. I am also changing my approach of how we motivate and reward him so I am hoping that my new system (rewarding him for keeping a private daily log on his appetite, temptations, etc.) will be more effective in encouraging him to keep an honest record of his observations. Additionally, I will be keeping track of my observations with him with my own daily log and we will continue with the exposure hierarchy.
Phew, it's been a lot of work and there's a lot more to do but so far, I still have hope!
Friday, November 11, 2016
52) A meta-examination reveals a major flaw in the experiment- working on fixing the flaw!
The presidential election has been a very divisive and upsetting time for most, if not, all Americans. During the week leading up to the election, either I've been too distracted by it to pay attention to Sasha's issues, felt his problems pale in comparison to what has been going on in national politics, or Sasha has actually had a better week! I think all three are true.
We have continued with the 6 iu daily dose of oxytocin. At my last report, he was still engaging in food sneaking behaviors and we had some meltdowns and tense moments with him which was discouraging and not making me feel safe to do exposure work with him. We have since added 50 mg of Naltrexone to the mix and it SEEMS that he has had an easier time resisting his temptations. Again, all I can really say is that we have not had any fights between Kitchen Bitch and HO Monster this week and there have been no signs or reported incidents of sneaking/stealing. Due to the difficulty of getting accurate information from Sasha (low accuracy due to his faulty memory and his conflict of interest with admitting the truth), I have grown very weary of trying to determine if his appetite was larger or smaller or if he was having more or fewer cravings and incidents of food sneaking. It was impossible to do with any degree of accuracy without treating our home like a prison and Sasha like a prisoner. No kid wants to be treated as an imprisoned criminal and no parent wants to feel and act like a prison guard!
Since we have insufficient guidance from research literature about how to manipulate our independent variable (including proper dosage, frequency of dose, interaction effects, etc.) at the VERY least, we need to figure out the dependent variable...what the heck is the effect of the treatment?! I'm frustrated as I write this because I am realizing that the only accurate information I can glean about treatment effects is his weight whereas I was started this experiment in order to see behavioral changes in him (decreased food seeking). After nearly 6 months on oxytocin (I can't believe it's been 6 months already!), I think I am finally accepting, for real, that it simply doesn't work to get Sasha to turn himself in to the food police (which is what my demand for truth from him really amounts to...)
Instead, we are trying out a new system in which Sasha keeps track of certain variables on a daily basis at a regular interval (we are trying to have him do it before dinner). I have told him that he is to keep the record private and that it is a journal for him to track level of food intensity (frequency of food thoughts, intensity of hunger), level of appetite, temptations to take things (food and non-food), and whether or not he did take something (food and non-food). Although I have told him on countless occasions that I am NOT interested in punishing him for any food or non-food sneaking, our reward system contradicted this message. Up until now, we had been promising him a reward after having a "good week" (a week without evidence of sneaking/stealing). Of course, if he is still sneaking food, this reward system only motivates him to (1) hone his sneaking skills and (2) become more adept at lying about it.
Duh... how dumb am I? Why has it taken me this long to realize that our reward system was actually REWARDING him to improve in his abilities to sneak and lie about it! As his mother, my blind spots (aka my judgment of his behavior and my desperate concern for his future-can I keep him out of jail for theft?) have kept me from seeing a rather obvious mistake in the experiment. Despite my good intentions to try to glean accurate information from him (does nagging at him for the truth count? LOL), I inadvertently did the opposite. If we really want him to be honest about his observations of himself, we will need to remove "abstention from sneaking" as a condition for a reward. Instead, we can reward him for keeping his daily log on his observations, irrespective of its content. Hopefully, Sasha's daily log (whose content does not result in our reward or punishment) can result in attaining more accurate data and prove useful for the conduction of this experiment.
I'm going to ponder a bit more about this insight and let you know how it goes with the new reward system. After discussing this insight with Sasha, he readily agreed with me and was enthusiastic about keeping his private log (to be shared with me only at the end of the week and to be rewarded with a prize irrespective of how many times he reports sneaking behaviors).
As far as the week has gone, according to Sasha, he has had "temptations" to sneak food/non-food but reports that he has found it easier this week to resist his temptations. His weight (dropping to the lowest it has been since the start of the 6-month long experiment) helps to support his claims. Maybe the addition of Naltrexone is doing something beneficial? If his reports are really true, I sure hope it continues!
We have continued with the 6 iu daily dose of oxytocin. At my last report, he was still engaging in food sneaking behaviors and we had some meltdowns and tense moments with him which was discouraging and not making me feel safe to do exposure work with him. We have since added 50 mg of Naltrexone to the mix and it SEEMS that he has had an easier time resisting his temptations. Again, all I can really say is that we have not had any fights between Kitchen Bitch and HO Monster this week and there have been no signs or reported incidents of sneaking/stealing. Due to the difficulty of getting accurate information from Sasha (low accuracy due to his faulty memory and his conflict of interest with admitting the truth), I have grown very weary of trying to determine if his appetite was larger or smaller or if he was having more or fewer cravings and incidents of food sneaking. It was impossible to do with any degree of accuracy without treating our home like a prison and Sasha like a prisoner. No kid wants to be treated as an imprisoned criminal and no parent wants to feel and act like a prison guard!
Since we have insufficient guidance from research literature about how to manipulate our independent variable (including proper dosage, frequency of dose, interaction effects, etc.) at the VERY least, we need to figure out the dependent variable...what the heck is the effect of the treatment?! I'm frustrated as I write this because I am realizing that the only accurate information I can glean about treatment effects is his weight whereas I was started this experiment in order to see behavioral changes in him (decreased food seeking). After nearly 6 months on oxytocin (I can't believe it's been 6 months already!), I think I am finally accepting, for real, that it simply doesn't work to get Sasha to turn himself in to the food police (which is what my demand for truth from him really amounts to...)
Instead, we are trying out a new system in which Sasha keeps track of certain variables on a daily basis at a regular interval (we are trying to have him do it before dinner). I have told him that he is to keep the record private and that it is a journal for him to track level of food intensity (frequency of food thoughts, intensity of hunger), level of appetite, temptations to take things (food and non-food), and whether or not he did take something (food and non-food). Although I have told him on countless occasions that I am NOT interested in punishing him for any food or non-food sneaking, our reward system contradicted this message. Up until now, we had been promising him a reward after having a "good week" (a week without evidence of sneaking/stealing). Of course, if he is still sneaking food, this reward system only motivates him to (1) hone his sneaking skills and (2) become more adept at lying about it.
Duh... how dumb am I? Why has it taken me this long to realize that our reward system was actually REWARDING him to improve in his abilities to sneak and lie about it! As his mother, my blind spots (aka my judgment of his behavior and my desperate concern for his future-can I keep him out of jail for theft?) have kept me from seeing a rather obvious mistake in the experiment. Despite my good intentions to try to glean accurate information from him (does nagging at him for the truth count? LOL), I inadvertently did the opposite. If we really want him to be honest about his observations of himself, we will need to remove "abstention from sneaking" as a condition for a reward. Instead, we can reward him for keeping his daily log on his observations, irrespective of its content. Hopefully, Sasha's daily log (whose content does not result in our reward or punishment) can result in attaining more accurate data and prove useful for the conduction of this experiment.
I'm going to ponder a bit more about this insight and let you know how it goes with the new reward system. After discussing this insight with Sasha, he readily agreed with me and was enthusiastic about keeping his private log (to be shared with me only at the end of the week and to be rewarded with a prize irrespective of how many times he reports sneaking behaviors).
As far as the week has gone, according to Sasha, he has had "temptations" to sneak food/non-food but reports that he has found it easier this week to resist his temptations. His weight (dropping to the lowest it has been since the start of the 6-month long experiment) helps to support his claims. Maybe the addition of Naltrexone is doing something beneficial? If his reports are really true, I sure hope it continues!
Saturday, November 5, 2016
51) Craniopharyngioma clinical trials and research updates
I periodically check on research that may pertain to craniopharyngioma and/or hypothalamic obesity and am pleased when I learn about current clinical trials or recently published research.
In case you are interested, here are some actively recruiting studies on craniopharyngioma.
Stanford University is recruiting subjects (ages 6-30) to study social impairments among those with pituitary and hypothalamic tumors/disorders. http://med.stanford.edu/parkerlab/research/Biomarkers-of-Social-Impairments-in-Individuals-with-Hypothalamic-Pituitary-Disorders.html
Children's Hospital of Philadelphia is recruiting craniopharyngioma subjects (ages 10-21) with HO for an oxytocin study.
https://clinicaltrials.gov/ct2/show/NCT02849743
Seattle Children's Hospital is recruiting craniopharyngioma subjects (ages 10-25) with HO for an Exenatide study. The study is also taking place and recruiting in Minneapolis and Nashville.
https://clinicaltrials.gov/ct2/show/NCT02664441
Klinikum Oldenburg (Germany) is recruiting craniopharyngioma subjects (diagnosed before age 18) to study quality of life following various therapeutic interventions.
https://clinicaltrials.gov/show/NCT01272622
Dr. Hoong Wei-Gan et al. (London Great Ormond Street Hospital for Children) presented a poster on oxytocin deficiency in hypothalamic obesity at an Endocrine Society conference in April, 2016:
http://abstracts.eurospe.org/hrp/0086/hrp0086P1-P738.htm
Dr. Gan is in the midst of conducting research on oxytocin and vasopressin deficiency among hypothalamic brain tumor survivors with HO and without HO to see if in fact those with HO have significantly lower levels oxytocin and vasopressin than those without HO. Finding a significant deficiency of oxytocin in the cohorts with HO would certainly suggest replacing the hormone in hypothalamic brain tumor survivors with HO. I am unable to find any indication of active recruitment so I assume his study is underway and closed for recruitment at the moment.
Dr. Elizabeth Lawson is the PI for an oxytocin trial for (non-cranio, BMI=30 to 50) obese adults at Massachusetts General Hospital: https://clinicaltrials.gov/ct2/show/NCT03043053
And last but not least, here is a very important and rare paper (abstract only) on craniopharyngioma and oxytocin, hot off the presses, published in September, 2016:
https://www.ncbi.nlm.nih.gov/pubmed/27585663
In case you are interested, here are some actively recruiting studies on craniopharyngioma.
Stanford University is recruiting subjects (ages 6-30) to study social impairments among those with pituitary and hypothalamic tumors/disorders. http://med.stanford.edu/parkerlab/research/Biomarkers-of-Social-Impairments-in-Individuals-with-Hypothalamic-Pituitary-Disorders.html
Children's Hospital of Philadelphia is recruiting craniopharyngioma subjects (ages 10-21) with HO for an oxytocin study.
https://clinicaltrials.gov/ct2/show/NCT02849743
Seattle Children's Hospital is recruiting craniopharyngioma subjects (ages 10-25) with HO for an Exenatide study. The study is also taking place and recruiting in Minneapolis and Nashville.
https://clinicaltrials.gov/ct2/show/NCT02664441
Klinikum Oldenburg (Germany) is recruiting craniopharyngioma subjects (diagnosed before age 18) to study quality of life following various therapeutic interventions.
https://clinicaltrials.gov/show/NCT01272622
Dr. Hoong Wei-Gan et al. (London Great Ormond Street Hospital for Children) presented a poster on oxytocin deficiency in hypothalamic obesity at an Endocrine Society conference in April, 2016:
http://abstracts.eurospe.org/hrp/0086/hrp0086P1-P738.htm
Dr. Gan is in the midst of conducting research on oxytocin and vasopressin deficiency among hypothalamic brain tumor survivors with HO and without HO to see if in fact those with HO have significantly lower levels oxytocin and vasopressin than those without HO. Finding a significant deficiency of oxytocin in the cohorts with HO would certainly suggest replacing the hormone in hypothalamic brain tumor survivors with HO. I am unable to find any indication of active recruitment so I assume his study is underway and closed for recruitment at the moment.
Dr. Elizabeth Lawson is the PI for an oxytocin trial for (non-cranio, BMI=30 to 50) obese adults at Massachusetts General Hospital: https://clinicaltrials.gov/ct2/show/NCT03043053
And last but not least, here is a very important and rare paper (abstract only) on craniopharyngioma and oxytocin, hot off the presses, published in September, 2016:
https://www.ncbi.nlm.nih.gov/pubmed/27585663
Thursday, November 3, 2016
50) Post-Halloween post-mortem
Well, as I predicted, there would be fallout from Halloween. Halloween itself was manageable. I escorted Sasha as he went trick-or-treating in the neighborhood in his homemade Jelly Belly costume (if you can't beat 'em, be 'em). He had a fun time showing off his costume and getting a moderate amount of candy. As planned, he ate a few pieces and then selected about a dozen pieces for safe keeping. His dad removed the rest of it and hid it elsewhere in the house. His sister also trick-or-treated with her friends and brought home her candy. Unlike Sasha, she didn't select her candy but kept the entire stash for sorting on another day. We never got around to sorting her candy and ended up keeping the whole bag (60 pieces or so) locked in one of the kitchen cabinets.
Today his sister looked into her Halloween stash and was dismayed to find that it had greatly shrunk! Only a few days ago, she had 60 pieces and tonight, there were only 5 or 6 pieces left! We all thought it was their dad who ate the candy but it turns out it was someone else...
Cut to earlier today:
I was proud of Sasha this afternoon when he told me that he was feeling tempted by the candy that was brought in by kids at school to donate to a charity that collects candy for disadvantaged youth (yeah, soon to be even more disadvantaged by diabetes mellitus and rotting teeth!). Sasha told me that a huge bowl of candy sat on the counter of the school office that beckoned to him and drove him to distraction whenever he was near or in the office. He decided that he wanted to talk with his IEP case manager to move the candy out of sight so as not to continue to tempt him. Fighting back tears, he told me that he did not want the candy there to tempt him and to possibly get him into trouble. He told me that he felt really good about his honesty with himself and that he could admit he needed support to cope with the candy temptations.
Needless to say, I was glad to have him voluntarily bring up his struggle as it demonstrated his maturity and his awareness of his powerlessness over the candy temptation. I have always been a huge proponent of the wise saying called 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." To me, having Sasha admit that he was powerless over the candy's lure gave him the permission to ask for help to have it removed from his line of sight.
Bravo, Sasha.
Now, back to tonight to our discovery that his sister's candy was largely gone... after she told us that the candy was missing, we glibly blamed their dad (he is also a chocoholic!) and said that we would just ask him about it when he got home from work. About 20 minutes after this conversation, Sasha approached me and told me he had something to tell me. He then confessed that he had been eating her candy and had been able to sneak it because the cabinet lock was loose and allowed him to open the cabinet enough to fish the candy out of the bag. Instead of feeling disappointed or angry at him, I felt only happiness that Sasha had confessed and admitted this on his own volition!! I thanked him and praised him for telling the truth and gave him a big hug. I asked him to apologize to his sister and he did. I reassured her that we would replace her candy and keep it locked up in a more secure location for her. He was disappointed and angry with himself for sneaking the candy and said that he felt badly about the weight he was probably gaining from the excess sugar he ate. In contrast, I was practically elated and told him that I was proud of him for telling the truth! Just 8 hours earlier, I had written a post to the Craniopharyngioma Facebook Group about my despondency in dealing with Sasha's chronic dishonesty that is directly related to his hyperphagia.
Despite the food sneaking, I am feeling grateful that Sasha was able to talk honestly with me and it gives me hope that we can rebuild our relationship that has been damaged by HO Monster.
And maybe, just maybe, Sasha can keep coming forward with the hard and brave truth.
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