I often feel like a medical detective as I poke around the internet reading PubMed papers on oxytocin and related subjects. I feel so fortunate that our situation with my son's brain tumor happened during a time when we have access to the world wide web. It is such a privilege to have the tools to read and learn all that I have since being dealt this unlucky hand. I think we've made the best of it, however, and I have become fascinated with the world of neuroendocrinology ever since. I guess you can say it's like making lemonade out of lemons!
I've also been sharing my blog with medical (mostly oxytocin) researchers from all over the world. I have received very supportive responses from some of these researchers as they cheer me on and even thank me for letting them know that I have read and applied their research for a useful purpose (to help my son and others). It is gratifying in all ways and I am pleased to know that my matchmaking efforts (between the medical community and the patients/caregivers they serve) are paying off. Slowly but surely, I know patients and their caregivers are chipping away at the medical establishment by sharing our experiment and the existing medical literature with their medical providers. My hope is that persistence will pay off and that conventionally practicing endocrinologists will have their curiosity piqued and more research will be funded to study the role this important neurohormone, oxytocin.
Sometimes I stumble on information that I wasn't even expecting and this is even more exciting... Learning from a neuroscience researcher that opiate antagonists interact with (potentiate) oxytocin was really cool since I did not know that when I decided to have Sasha try Naltrexone. Little did I know that I would later be learning even more about oxytocin's benefits beyond its impact on social motivation and metabolism.
After sending my blog to an oxytocin researcher in France, he graciously shared one of his recent publications with me which was on the role of oxytocin in bone health (as well as with metabolic health). Here are a few of articles cited from the literature on oxytocin's role with bone health and metabolic disorders.
1. https://www.degruyter.com/downloadpdf/j/hmbci.2016.28.issue-2/hmbci-2016-0045/hmbci-2016-0045.xml
2. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4530313/
3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4435037/
I started to wonder if my son and others who have oxytocin deficiency also suffer from bone health issues? Oxytocin is a neurohormone made in the hypothalamus and secreted by the posterior pituitary gland, like vasopressin, the antidiuretic hormone. I have suspected that many sufferers of central Diabetes Insipidus (DI) are probably missing oxytocin since the neuroanatomy affecting their DI is very similar to the neuroanatomy affecting oxytocin production and secretion. Unlike DI, there isn't really a proper label for those who suffer from oxytocin deficiency- no official disease name- unless you count some disorders that may be linked in part to oxytocin deficiency (autism, PWS, Hypothalamic Obesity, PHP, etc.). Well, when I sent the paper on oxytocin and bone density to a Facebook group on DI, I received some confirmation from members that there IS some prevalence of osteoporosis and other bone defects, suggesting some overlap between DI and posterior pituitary hormone deficiency- perhaps oxytocin?? Then I looked at PubMed and AHA...! There were more papers documenting the co-morbidity between DI and bone disorders. Here is one of such papers:
https://academic.oup.com/jcem/article-lookup/doi/10.1210/jcem.83.7.4987
Interestingly, the authors concluded the following excerpt in their abstract (italicized phrase to emphasize my point): "In conclusion, patients with central diabetes insipidus had a significant bone impairment, compared with healthy subjects. Replacement with endonasal desmopressin at standard doses was not able to prevent or reverse the bone impairment. These findings suggest that, in patients with central diabetes insipidus, bone status analysis is mandatory; and a bone-loss preventing treatment might be beneficial."
I found this additional role of oxytocin very interesting. If you put two and two together, you can see how bone health may be an overlooked condition with sufferers of DI and others who no longer make oxytocin. The above italicized excerpt makes a point to say that vasopressin replacement does not fix the bone problems. Could it be that the OTHER posterior pituitary hormone (yeah, that one) is the one in question? Despite what appears from these studies to be a connection between posterior pituitary hormone functioning and bone defects, in the last five years of my son's post-brain tumor conditions, we have never been asked to test his bone health and he has never been suggested to take supplements (if they would even work) to prevent bone loss.
Yes, I know correlation is not the same as causation and maybe you're not yet convinced that oxytocin is needed for bone health but here's another interesting correlation: PWS (caused by a genetic mutation and leading to abnormal development of the hypothalamus/oxytocin deficiency) has a high prevalence of scoliosis, a bone defect causing a curvature of the spine. I am certainly no expert on PWS but I am now wondering if there is an oxytocin-related explanation for why there is such a high prevalence (estimated at 37% with a range from 15-86% as gleaned by PWS review literature) of scoliosis in kids with PWS since studies have demonstrated oxytocin deficiency in PWS.
Now if I had any sense, I would go to bed now (it's 1 AM)- my curiosity now wants me to look up connections between PWS and DI, panhypopituitarism and bone density, autism and DI, etc.
Oxytocin is known most commonly for uterine contractions during labor, milk let down, etc. Some know it as a potentially useful treatment for social bonding ("cuddle hormone"), mood and anxiety disorders, and autism. Even fewer people know that it is useful for the treatment of metabolic disorders and obesity. I am learning now that it is useful for bone health. I have also heard it is useful in the treatment for pain and perhaps I will look into this at a later date. Oxytocin does so much more than what is conventionally believed! What else will we learn about oxytocin?
Makes you wonder, right?
Monday, January 30, 2017
Friday, January 27, 2017
67) Tough love
As parents to a kid who had a brain tumor and all the other terrible consequences of the tumor, we have not felt comfortable disciplining him as we would a typical kid. Even when he engaged in what most would deem illicit behavior, we felt trapped by our doubts that corrective action would have any impact on his behaviors (stealing food or money for food, for example) since they appeared to be out of his control.
I am fairly sure that Sasha's behaviors, although maladaptive in most people's eyes, were probably adaptive in his eyes. After all, a hungry person will do whatever he needs to do to feed himself to keep himself alive. I believe he developed some habits as a result of his chronic hunger and the stringent lifestyle we created for him to try to control his excessive food seeking. The natural consequence of hunger+food policing=increased sneakiness, I'm sure.
Well, yesterday he was caught by his dad sneaking a package of graham crackers that he took from his afterschool care's snack table. We reminded him that he would be punished by having money taken out of his account. Instead of earning money for having a theft-free week, he would now have that same amount of money confiscated. As expected, he felt very sad. When I asked him why he was so sad, he said, "because I don't want you taking my money away." So, it appears that he was sad because he was caught and didn't want his money taken away, not because he did something wrong by stealing. That's ok- most kids would feel the same. Now that he likes to buy Magic cards for collection, this hurt him. Well, good. I reminded him that we discussed this as a motivation for him to not steal and that it was a reminder that while he doesn't like having someone take something from him, he should also think that others don't like having him take things from them. I asked him if he was thinking about consequences (this punishment) when he decided to take the graham crackers. He said "no." I dug in deeper and told him, "I hope that you will remember how badly you feel right now the next time you think about taking something that doesn't belong to you."
Aversive conditioning is supposed to make someone feel badly in order to make an association of the bad feeling with the undesirable behavior in order to decrease the undesirable behavior. I am confident that the oxytocin and naltrexone are improving his hunger and satiety issues (we received confirmation just yesterday at his school IEP meeting that he has significantly REDUCED- but not completely cured- his food seeking problems, yay). Now that the neuroendocrine problems are in better shape, it's time for some more psychological interventions! Let's see if my psychologist hat will serve my role as a mom here... I can only hope these punishments will be felt as painful enough by him to start undoing some of his bad habits from the days of HO monster.
I am fairly sure that Sasha's behaviors, although maladaptive in most people's eyes, were probably adaptive in his eyes. After all, a hungry person will do whatever he needs to do to feed himself to keep himself alive. I believe he developed some habits as a result of his chronic hunger and the stringent lifestyle we created for him to try to control his excessive food seeking. The natural consequence of hunger+food policing=increased sneakiness, I'm sure.
Well, yesterday he was caught by his dad sneaking a package of graham crackers that he took from his afterschool care's snack table. We reminded him that he would be punished by having money taken out of his account. Instead of earning money for having a theft-free week, he would now have that same amount of money confiscated. As expected, he felt very sad. When I asked him why he was so sad, he said, "because I don't want you taking my money away." So, it appears that he was sad because he was caught and didn't want his money taken away, not because he did something wrong by stealing. That's ok- most kids would feel the same. Now that he likes to buy Magic cards for collection, this hurt him. Well, good. I reminded him that we discussed this as a motivation for him to not steal and that it was a reminder that while he doesn't like having someone take something from him, he should also think that others don't like having him take things from them. I asked him if he was thinking about consequences (this punishment) when he decided to take the graham crackers. He said "no." I dug in deeper and told him, "I hope that you will remember how badly you feel right now the next time you think about taking something that doesn't belong to you."
Aversive conditioning is supposed to make someone feel badly in order to make an association of the bad feeling with the undesirable behavior in order to decrease the undesirable behavior. I am confident that the oxytocin and naltrexone are improving his hunger and satiety issues (we received confirmation just yesterday at his school IEP meeting that he has significantly REDUCED- but not completely cured- his food seeking problems, yay). Now that the neuroendocrine problems are in better shape, it's time for some more psychological interventions! Let's see if my psychologist hat will serve my role as a mom here... I can only hope these punishments will be felt as painful enough by him to start undoing some of his bad habits from the days of HO monster.
Monday, January 23, 2017
66) Freedom is not free! Behavioral improvements are rewarded with more consequences
I am embarking upon one of my most loathsome tasks of the year... that's right, summer camp planning. Ugh. Those of you who have done this know what I mean when I complain about its aggravating nature. For those of us working parents, we rely on camps to keep our kids occupied during the summer while we work. Planning for 10 weeks of summer one week at a time is tiresome. When you have two kids with different interests, it's doubly harder. When you have two kids when one is aging out of camps (Sasha is aging out of many camps since he will be starting high school next year), the number of available camps shrinks and it's harder still. When your teenage kid has special needs, it starts to get downright stressful.
Sigh.
Well, it has to be done nonetheless. In the past, I have wavered between wanting to tell the camps *everything* they need to know about Sasha (including his many medical issues, emergency medical care protocol, behavioral problems i.e.: food seeking, visual impairment, etc.) so that they are prepared to handle him versus wanting to give them minimal information so that they don't turn him away because he has too many problems. I have erred on the side of being very transparent with these camps and have been very pleasantly surprised by the welcoming nature of most camps we've tried. Some camps have been so accommodating, I have felt touched by the kindness shown to us. Now that he is aging out of most camps, one option is for him to be a Counselor-In-Training (CIT) for the younger kids at camp. Funny, just last year he required extra supervision for his food seeking, water drinking (Sasha has Diabetes Insipidus with absent thirst), heat intolerance/temperature dysregulation, fatigue, visual impairment, etc. This year, he still has most of these problems but we are actually considering having him be a CIT in certain camps. After some thought and planning, I believe he may do well as a CIT camper at some of the familiar camps (with the super supportive camp directors/staff). Sasha is excited about this opportunity- he has always had a special affinity to helping younger kids or kids with special needs (autistic kids).
This summer, we will also send Sasha to a sleep-away camp for kids with vision impairment. Two years ago he tried it for the first time and had a relatively successful time- his first week EVER being away from his parents for an entire week! He tried the camp last summer but had some behavioral problems (we think this was the week he started sneakily acquiring tons of chocolate) and was asked to leave camp by the nurse. We are going to have him try attending the camp again and hope that the improvements he has made with oxytocin/naltrexone will help him have a successful week with minimal problems. Of course, we still have our doubts and anxieties about these upcoming challenges but we will "fake it until we make it" as they say.
In our attempts to entrust Sasha with increasing freedom as he matures, we also feel it is now appropriate to apply some consequences for his undesirable behaviors. Before Sasha started to benefit from oxytocin/naltrexone treatment, he was engaging in frequent and regular food/non-food sneaking and stealing but we did not have the heart to punish him for his behaviors because we did not think he could fully control them. Furthermore, he was only interested in food so it was hard to find useful leverage to use as consequences. In effect, there was nothing we could take away from him (no privileges, fun activities, toys) as a punishment for his misbehavior because none of them would have mattered to him. The only thing we could have taken away was food and we didn't think it was a good idea because his brain tumor was already giving him a big enough complex about food and we didn't think he needed any more baggage from us. Also, it was heartbreaking to see his shame and self-loathing whenever he was caught sneaking/stealing food. We felt that it was punishment enough for him to experience these terrible feelings and only hoped that they would deter him from continuing to engage in these behaviors... sadly, they didn't. Fortunately, oxytocin/naltrexone has helped.
Now that Sasha has had a few months to demonstrate a more normal appetite, more normal relationship with food, and an ability to feel sated after eating a moderate amount of food, we feel that he is ready to take more responsibility for his own choices. I wrote in a recent post about free will and I believe that Sasha now has the ability to exercise his own free will to decide whether or not to steal food/non-food. Until recently, we were merely incentivizing him to "make good choices" (not engage in food/non-food seeking) by letting him "earn" money (kept by us) for every week he is not caught stealing. Now we will add the additional incentive by docking his earned money for every incident he is caught stealing or attempting to steal food/non-food. Since Sasha has made a friend and has a hobby (Magic the Gathering cards), we have leverage (yes!) and he has two good reasons to stay on the path of good choices! He understands that if he ever stole something from his friend, he would risk losing this friend and risk ruining his reputation among the group of kids with whom he plays cards. He also really values his cards and would be very sad to have his reward money confiscated for his misbehavior.
I had a talk with him about this a week ago and he was upset when I presented it to him. However, after I explained that the new consequences are 1) an indication of his progress due to our belief that he can now make good choices (whereas before, he was controlled by HO Monster) and 2) yet another motivation for him to make good choices to earn his growing independence- he calmed down and was able to agree with me that it was a good idea. We have yet to catch him being sneaky or dishonest since starting the plan so we haven't yet had to take away his earnings but he knows we are still watching and that we will do it if necessary. Let's hope that the additional incentive will keep him honest!
Sigh.
Well, it has to be done nonetheless. In the past, I have wavered between wanting to tell the camps *everything* they need to know about Sasha (including his many medical issues, emergency medical care protocol, behavioral problems i.e.: food seeking, visual impairment, etc.) so that they are prepared to handle him versus wanting to give them minimal information so that they don't turn him away because he has too many problems. I have erred on the side of being very transparent with these camps and have been very pleasantly surprised by the welcoming nature of most camps we've tried. Some camps have been so accommodating, I have felt touched by the kindness shown to us. Now that he is aging out of most camps, one option is for him to be a Counselor-In-Training (CIT) for the younger kids at camp. Funny, just last year he required extra supervision for his food seeking, water drinking (Sasha has Diabetes Insipidus with absent thirst), heat intolerance/temperature dysregulation, fatigue, visual impairment, etc. This year, he still has most of these problems but we are actually considering having him be a CIT in certain camps. After some thought and planning, I believe he may do well as a CIT camper at some of the familiar camps (with the super supportive camp directors/staff). Sasha is excited about this opportunity- he has always had a special affinity to helping younger kids or kids with special needs (autistic kids).
This summer, we will also send Sasha to a sleep-away camp for kids with vision impairment. Two years ago he tried it for the first time and had a relatively successful time- his first week EVER being away from his parents for an entire week! He tried the camp last summer but had some behavioral problems (we think this was the week he started sneakily acquiring tons of chocolate) and was asked to leave camp by the nurse. We are going to have him try attending the camp again and hope that the improvements he has made with oxytocin/naltrexone will help him have a successful week with minimal problems. Of course, we still have our doubts and anxieties about these upcoming challenges but we will "fake it until we make it" as they say.
In our attempts to entrust Sasha with increasing freedom as he matures, we also feel it is now appropriate to apply some consequences for his undesirable behaviors. Before Sasha started to benefit from oxytocin/naltrexone treatment, he was engaging in frequent and regular food/non-food sneaking and stealing but we did not have the heart to punish him for his behaviors because we did not think he could fully control them. Furthermore, he was only interested in food so it was hard to find useful leverage to use as consequences. In effect, there was nothing we could take away from him (no privileges, fun activities, toys) as a punishment for his misbehavior because none of them would have mattered to him. The only thing we could have taken away was food and we didn't think it was a good idea because his brain tumor was already giving him a big enough complex about food and we didn't think he needed any more baggage from us. Also, it was heartbreaking to see his shame and self-loathing whenever he was caught sneaking/stealing food. We felt that it was punishment enough for him to experience these terrible feelings and only hoped that they would deter him from continuing to engage in these behaviors... sadly, they didn't. Fortunately, oxytocin/naltrexone has helped.
Now that Sasha has had a few months to demonstrate a more normal appetite, more normal relationship with food, and an ability to feel sated after eating a moderate amount of food, we feel that he is ready to take more responsibility for his own choices. I wrote in a recent post about free will and I believe that Sasha now has the ability to exercise his own free will to decide whether or not to steal food/non-food. Until recently, we were merely incentivizing him to "make good choices" (not engage in food/non-food seeking) by letting him "earn" money (kept by us) for every week he is not caught stealing. Now we will add the additional incentive by docking his earned money for every incident he is caught stealing or attempting to steal food/non-food. Since Sasha has made a friend and has a hobby (Magic the Gathering cards), we have leverage (yes!) and he has two good reasons to stay on the path of good choices! He understands that if he ever stole something from his friend, he would risk losing this friend and risk ruining his reputation among the group of kids with whom he plays cards. He also really values his cards and would be very sad to have his reward money confiscated for his misbehavior.
I had a talk with him about this a week ago and he was upset when I presented it to him. However, after I explained that the new consequences are 1) an indication of his progress due to our belief that he can now make good choices (whereas before, he was controlled by HO Monster) and 2) yet another motivation for him to make good choices to earn his growing independence- he calmed down and was able to agree with me that it was a good idea. We have yet to catch him being sneaky or dishonest since starting the plan so we haven't yet had to take away his earnings but he knows we are still watching and that we will do it if necessary. Let's hope that the additional incentive will keep him honest!
Saturday, January 21, 2017
65) Testosterone: starting puberty= growth + weight gain and more...
Being a 14 year old boy with panhypopituitarism means that Sasha needs testosterone to get him into puberty. He is getting a starter dose of .125 ml of testosterone through a subcutaneous injection on a weekly basis. He had his first testosterone injection on December 21, 2016 (one month ago) and has had 5 injections total. On December 18, he was 172.1 cm or 5' 7.75" and weighed 70.6 kg or 155 pounds (BMI=23.8, 90th%). Today on January 20, (only one month later) he is 174 cm or 5' 8.5" and his weight is 72.3 kg or 159 pounds (BMI=23.8, 90th%). With his recent dramatic gain in height, he possesses the exact same BMI and weight percentile as he had on December 18. I have been reading that sex hormones cause weight (muscle) and height gains in teens and I guess that is what is happening with him. I have not seen any obvious increases in his appetite/eating yet nor have I suspected or received any news of food sneaking from anyone in the last week (and yes, I asked his teachers and after school director) so I don't believe his weight gain is explained by his increased eating.
I have heard from other parents of PHP kids that changes are noticeable quickly after the start of sex hormones and we might be seeing some of these changes already. Sasha sprouted his first pimple (he had flawless complexion until recently, boo hoo!) about two weeks after his first T injection and I am just waiting for the hairy, smelly changes to follow... will his appetite also increase? Probably. Will he get a teen attitude? Probably. Will he start thinking about sex? (cringing) I guess so. It is all natural and normal (with a little help from Pfizer), after all!
I have heard from other parents of PHP kids that changes are noticeable quickly after the start of sex hormones and we might be seeing some of these changes already. Sasha sprouted his first pimple (he had flawless complexion until recently, boo hoo!) about two weeks after his first T injection and I am just waiting for the hairy, smelly changes to follow... will his appetite also increase? Probably. Will he get a teen attitude? Probably. Will he start thinking about sex? (cringing) I guess so. It is all natural and normal (with a little help from Pfizer), after all!
Monday, January 16, 2017
64) Progress, yes- not perfection- humble musings of a parent
Another very social weekend for Sasha! He went to his friend's (there, I said it!) house on Saturday to hang out and play games. They had a great time together and his friend's mother indicated that Sasha was a "delight" to have over. The get together went so well that the boys made additional plans for the following day!
Yesterday evening he was taken out for a belated birthday dinner by a friend of mine who has known Sasha since he was an infant. She (Kathy) has been coming over on a regular basis for 13 years to babysit Sasha (and his sister) so that my husband and I could do date night. Needless to say, she is a close friend who knows Sasha well, both before and after his brain tumor. She hadn't seen him in a few months and noticed a very big difference between him, now and then (pre-oxytocin/naltrexone). According to Kathy, Sasha now exhibits a calmer, happier and more relaxed attitude. She noticed how he no longer exudes the anxious disposition he used to have when he was hyper-focused on food. During their dinner (at a Thai restaurant), Sasha ordered his favorite dish with some brown rice and left enough unfinished to bring home leftovers. After a couple of hours of hanging out at home playing cards, they went out for frozen yogurt and he had his (usual post-oxytocin) HEFY (Half-Eaten Frozen Yogurt). She also commented that he now has "things to talk about" other than on the subject of food. In talking with Kathy, it made me also think about how much calmer and relaxed I have felt being around him and how my irritable Kitchen Bitch persona has pretty much vanished.
Besides receiving this feedback from Kathy, I also received feedback yesterday from his educational therapist (with whom he has been seeing on a weekly basis for three years). She, too, commented on how he has been more energetic, happy, and focused in his school work over the last couple of months. And just a few minutes ago, I received a random text from a neighbor who saw him walking in the neighborhood today and commented to me that he looked "GREAT"- it was very gratifying to hear such positive feedback about Sasha from other adults in his life who have known Sasha for years!
As I mentioned, Sasha and his friend made additional plans yesterday to get together and today I brought them to a store (with dog in tow) where they attended a "pre-release" MTG card event... pure gaming geek heaven! I stayed around on the outskirts of the vicinity for the duration of the game (two hours) to give him extra supervision/support since the store sells junk food, just in case. Fortunately, I could see that he was plenty occupied by the game since he was playing with another individual and was in a separate room not at all connected to store with the candy access. Sasha had a great time at the event and reported "no temptations" to want to sneak any food or cards that did not belong to him... what success (and what relief)!
Finally, our good neighbor friends invited us over to their home for dinner tonight (my birthday was yesterday) and we were treated to a delicious homemade cassoulet dinner. We purposely did not restrict or nag Sasha at our friend's home in order to see what he would do. He hung out with the kids before dinner and did not eat any appetizers before dinner. He ate a hearty amount at dinner (like everyone else) which was fine. What was NOT fine was that he was tempted by the bag of Lindt truffles that were sitting atop their refrigerator and I caught him with his hand in the bag (literally) trying to sneak some chocolates after dinner.
Ugh.
It is times like this when it is difficult not to feel discouraged. After all, I started the experiment with the main goal of helping him normalize his relationship to food and to make it possible for us (his parents) to stop having to police him. When we catch him engaging in sneaky behavior, it is hard not to have the black and white attitude that he is NEVER to be trusted. Catching him stealing money from his father's wallet or trying to sneak chocolate at a friend's house is certainly grounds for believing that he is at risk for more dishonest behavior, right? Does it mean that we should never let him enter a store with candy? Does it mean that we should go back to policing him heavily again or restricting his access to social gatherings? I hate to expose him to situations he cannot handle and have him blow it. I also hate to return us to the old days of extreme vigilance or avoidance.
What to do? If only there were a parent handbook to help us figure this out. To be fair, he has definitely made progress in improving his relationship to food, his metabolic health, and his new friendships over the last 6 months. I can say this with confidence. However, he isn't cured. In my earnestness to find a solution to his HO, of course I was hoping for a miracle cure but there is no miracle cure for HO just like there is no miracle cure for being a flawed human being...sigh. All I can say is that we will do what we can to continue to support and correct him as needed- to restrict him from high risk situations, monitor him in moderate risk situations, and expose him to lower risk situations and hope and pray that he will be able to learn how to use his best judgment in each situation in order to earn more freedom from us and gain confidence in himself. After tonight's attempted chocolate sneaking, I asked him about the incident and reminded him that he could have simply asked our host for a piece or two of chocolate (which we would have allowed). I can only hope that he considers this as an option the next time he meets this temptation.
I can remember when I was a sassy teenager and when I acted not in accordance with my own parents. My mother would plead with me and ask me why I was so oppositional. It aggravated me to think that she assumed that I was reacting against her and I remember telling her that I did not necessarily always react for or against her. I told her that there was a thing called "free will" and that I used my own free will to choose my own actions. As a mother to Sasha, I can certainly appreciate the many factors that cause him to behave in the way he does... a brain tumor affecting his endocrine function... his hormone replacement medicines... a traumatic brain injury affecting his impulse control... a home environment restricting his access to food... a hunger for and a genetic predisposition to being a "chocoholic"... etc., and yes, even his own free will to make his own choices. Perhaps the most humbling thing about being a parent is the realization that no matter what we do, we are still not able to steer the course of our children's lives whether it is due to the circumstances of their environment, physiology, unknown and intangible forces, or because of their own free will.
I could decide to dig into doing more intensive research into finding the "right dose" or the right cocktail of medicines for Sasha. I could throw up my hands and call the experiment a failure because he still exhibits sneaky behaviors. Tonight I will do neither. Instead, I will consider the big picture and sit still with acceptance... that ALL of it (the good, the bad, and the ugly) is part of this mysterious journey we call Life.
Yesterday evening he was taken out for a belated birthday dinner by a friend of mine who has known Sasha since he was an infant. She (Kathy) has been coming over on a regular basis for 13 years to babysit Sasha (and his sister) so that my husband and I could do date night. Needless to say, she is a close friend who knows Sasha well, both before and after his brain tumor. She hadn't seen him in a few months and noticed a very big difference between him, now and then (pre-oxytocin/naltrexone). According to Kathy, Sasha now exhibits a calmer, happier and more relaxed attitude. She noticed how he no longer exudes the anxious disposition he used to have when he was hyper-focused on food. During their dinner (at a Thai restaurant), Sasha ordered his favorite dish with some brown rice and left enough unfinished to bring home leftovers. After a couple of hours of hanging out at home playing cards, they went out for frozen yogurt and he had his (usual post-oxytocin) HEFY (Half-Eaten Frozen Yogurt). She also commented that he now has "things to talk about" other than on the subject of food. In talking with Kathy, it made me also think about how much calmer and relaxed I have felt being around him and how my irritable Kitchen Bitch persona has pretty much vanished.
Besides receiving this feedback from Kathy, I also received feedback yesterday from his educational therapist (with whom he has been seeing on a weekly basis for three years). She, too, commented on how he has been more energetic, happy, and focused in his school work over the last couple of months. And just a few minutes ago, I received a random text from a neighbor who saw him walking in the neighborhood today and commented to me that he looked "GREAT"- it was very gratifying to hear such positive feedback about Sasha from other adults in his life who have known Sasha for years!
As I mentioned, Sasha and his friend made additional plans yesterday to get together and today I brought them to a store (with dog in tow) where they attended a "pre-release" MTG card event... pure gaming geek heaven! I stayed around on the outskirts of the vicinity for the duration of the game (two hours) to give him extra supervision/support since the store sells junk food, just in case. Fortunately, I could see that he was plenty occupied by the game since he was playing with another individual and was in a separate room not at all connected to store with the candy access. Sasha had a great time at the event and reported "no temptations" to want to sneak any food or cards that did not belong to him... what success (and what relief)!
Finally, our good neighbor friends invited us over to their home for dinner tonight (my birthday was yesterday) and we were treated to a delicious homemade cassoulet dinner. We purposely did not restrict or nag Sasha at our friend's home in order to see what he would do. He hung out with the kids before dinner and did not eat any appetizers before dinner. He ate a hearty amount at dinner (like everyone else) which was fine. What was NOT fine was that he was tempted by the bag of Lindt truffles that were sitting atop their refrigerator and I caught him with his hand in the bag (literally) trying to sneak some chocolates after dinner.
Ugh.
It is times like this when it is difficult not to feel discouraged. After all, I started the experiment with the main goal of helping him normalize his relationship to food and to make it possible for us (his parents) to stop having to police him. When we catch him engaging in sneaky behavior, it is hard not to have the black and white attitude that he is NEVER to be trusted. Catching him stealing money from his father's wallet or trying to sneak chocolate at a friend's house is certainly grounds for believing that he is at risk for more dishonest behavior, right? Does it mean that we should never let him enter a store with candy? Does it mean that we should go back to policing him heavily again or restricting his access to social gatherings? I hate to expose him to situations he cannot handle and have him blow it. I also hate to return us to the old days of extreme vigilance or avoidance.
What to do? If only there were a parent handbook to help us figure this out. To be fair, he has definitely made progress in improving his relationship to food, his metabolic health, and his new friendships over the last 6 months. I can say this with confidence. However, he isn't cured. In my earnestness to find a solution to his HO, of course I was hoping for a miracle cure but there is no miracle cure for HO just like there is no miracle cure for being a flawed human being...sigh. All I can say is that we will do what we can to continue to support and correct him as needed- to restrict him from high risk situations, monitor him in moderate risk situations, and expose him to lower risk situations and hope and pray that he will be able to learn how to use his best judgment in each situation in order to earn more freedom from us and gain confidence in himself. After tonight's attempted chocolate sneaking, I asked him about the incident and reminded him that he could have simply asked our host for a piece or two of chocolate (which we would have allowed). I can only hope that he considers this as an option the next time he meets this temptation.
I can remember when I was a sassy teenager and when I acted not in accordance with my own parents. My mother would plead with me and ask me why I was so oppositional. It aggravated me to think that she assumed that I was reacting against her and I remember telling her that I did not necessarily always react for or against her. I told her that there was a thing called "free will" and that I used my own free will to choose my own actions. As a mother to Sasha, I can certainly appreciate the many factors that cause him to behave in the way he does... a brain tumor affecting his endocrine function... his hormone replacement medicines... a traumatic brain injury affecting his impulse control... a home environment restricting his access to food... a hunger for and a genetic predisposition to being a "chocoholic"... etc., and yes, even his own free will to make his own choices. Perhaps the most humbling thing about being a parent is the realization that no matter what we do, we are still not able to steer the course of our children's lives whether it is due to the circumstances of their environment, physiology, unknown and intangible forces, or because of their own free will.
I could decide to dig into doing more intensive research into finding the "right dose" or the right cocktail of medicines for Sasha. I could throw up my hands and call the experiment a failure because he still exhibits sneaky behaviors. Tonight I will do neither. Instead, I will consider the big picture and sit still with acceptance... that ALL of it (the good, the bad, and the ugly) is part of this mysterious journey we call Life.
Monday, January 9, 2017
63) Another momentous sign of progress... a friendship!
We had an awesome weekend- in my last post, I documented the great time we all had at a potluck dinner party on Saturday night. The very next day, Sasha had a birthday party (he turned 14 years old on New Year's Day) complete with friends in attendance! It is no small feat that Sasha was able to have a birthday party with friends to invite. There were only four boys (including Sasha) so it was a small party but this was the very first one since his brain tumor diagnosis and surgery where he had over some kids whose friendships he had nurtured on his own. He had a great time with them and my heart was filled with joy as I observed him engaging in ordinary social interactions with these boys. He seemed so natural and it was as if he had done it all his life but I knew that these social interactions with his peers were special and new to him.
Today he came home from school and told me that one of these new friends, A, approached him during lunch and asked to eat lunch with Sasha! They had lunch together and then went together to the lunch time gathering where they played their card game. To top it all off, I received a text from A's mother after school today to invite Sasha over on the weekend to hang out with A!! This is the first ever invitation Sasha has received from a friend he made completely on his own! Woo hoo!
Sasha told me today, "Mom, I am really glad to have a friend. I never had friends before and it makes me happy to have friends now. "
The timing couldn't be better. Since his brain tumor surgery five years ago, Sasha never showed much interest or initiative in befriending kids his age. Even if he had, we would have been very reluctant to allow him to go over to anyone's house unsupervised. The fear that he would eat without discretion was always looming in our minds. Fortunately and unfortunately, he was never invited over by anyone since he had no friends so we didn't have to deal with the issue. Now that his hyperphagia behaviors are much more under control, we can actually permit him to go to another kid's house! We will still caution him to make good choices, of course (recall that he still has a tendency to take our money if he has an opportunity), but I think he is ready to be entrusted with more freedom so long as he is careful.
Those of you who (have kids who) have struggled with the same issues- take heart! Oxytocin (and naltrexone as a drug which potentiates oxytocin's effect) seems to be doing the trick to improve Sasha's social motivation and to give him the desire to make and keep friends!
Today he came home from school and told me that one of these new friends, A, approached him during lunch and asked to eat lunch with Sasha! They had lunch together and then went together to the lunch time gathering where they played their card game. To top it all off, I received a text from A's mother after school today to invite Sasha over on the weekend to hang out with A!! This is the first ever invitation Sasha has received from a friend he made completely on his own! Woo hoo!
Sasha told me today, "Mom, I am really glad to have a friend. I never had friends before and it makes me happy to have friends now. "
The timing couldn't be better. Since his brain tumor surgery five years ago, Sasha never showed much interest or initiative in befriending kids his age. Even if he had, we would have been very reluctant to allow him to go over to anyone's house unsupervised. The fear that he would eat without discretion was always looming in our minds. Fortunately and unfortunately, he was never invited over by anyone since he had no friends so we didn't have to deal with the issue. Now that his hyperphagia behaviors are much more under control, we can actually permit him to go to another kid's house! We will still caution him to make good choices, of course (recall that he still has a tendency to take our money if he has an opportunity), but I think he is ready to be entrusted with more freedom so long as he is careful.
Those of you who (have kids who) have struggled with the same issues- take heart! Oxytocin (and naltrexone as a drug which potentiates oxytocin's effect) seems to be doing the trick to improve Sasha's social motivation and to give him the desire to make and keep friends!
Saturday, January 7, 2017
62) Having fun! Sasha chooses socializing over food (OMG!)
Tonight we went to my friend's home for a potluck dinner. Every year, we gather twice with these friends with whom I went to graduate school. I have known these friends for almost 30 years... yikes, scary to say that I met friends in graduate school almost 30 years ago but it's true- that is how old I am now! Anyway, we have watched each other get married and have kids and they have known about our struggles with Sasha's brain tumor and the resulting complications with his hypothalamic obesity, etc. At every party in the past, they have seen us fuss over Sasha's food obsessions and how we (his dad and I) have had to take turns following him around the host's house to monitor his eating and to try to make sure that he does not overeat. As you can well imagine, it is not a lot of fun to have to police Sasha at a party and does not make for a very relaxing time for us. Usually, we avoid these types of parties or we go to the party with dread and a healthy dose of hypervigilance.
Tonight was different. Well, Sasha was different. The spread of food was still plentiful- cheeses, chips, crackers, dips, and vegetables were the appetizers that were laid out on the coffee table in the living room. Instead of hanging out by the food or visiting the food table over and over again, Sasha was at the dining room table playing his favorite card game with another kid! I almost couldn't believe it as the minutes flew by while I watched Sasha immerse himself in a social interaction with another boy while a table full of food laid exposed in the adjacent room... it was as if there was no food around! Sasha was fully engaged in playing the game with the other boy (they have met a few times in the past but were much more engaged tonight than in the past) and didn't stop playing until about five minutes before dinner was to be served. At that point, the boys were kicked out of the dining room and Sasha came into the living room to eat a few of the appetizers. Then he went into the kitchen with the other kids (six in total) and served himself dinner (a moderate portion of lasagne, salad, bread). The adults ate in the dining room. After dinner, we all hung out and chatted and Sasha continued to hang out with the other boy. My friends remarked how different Sasha seemed ("he's socializing, he's not focused on the food!") and how different my husband and I were acting ("you seem so RELAXED, you're sitting still in one room and not getting up to follow him around!").
I was so pleased with Sasha's behavior at tonight's party and so was my husband (and he tends to NEVER be able to relax at any parties with Sasha). It was so lovely to see Sasha having a good time socializing with another boy his age, especially in the presence of tempting foods. Afterwards, Sasha approached me and told me himself that he was also very happy that he had such a good time at the party. He noted that he was having so much fun hanging out with the other boy, he was not even thinking about eating the food at the party. He also expressed interest in getting together with the boy again so they can "hang out" and play Magic cards together again.
Wow.
Tomorrow Sasha will celebrate his 14th birthday with three other boys (it's still hard for me to call them his friends- such a foreign concept that Sasha has actual friends!). He is super excited about his birthday party and acknowledges that it will be a "first" for him to be inviting kids that he has (mostly) befriended on his own. I am very much looking forward to seeing Sasha enjoy himself at his party. Hooray for new friends! I will post again if I end up having any more news to report post-birthday party.
Tonight was different. Well, Sasha was different. The spread of food was still plentiful- cheeses, chips, crackers, dips, and vegetables were the appetizers that were laid out on the coffee table in the living room. Instead of hanging out by the food or visiting the food table over and over again, Sasha was at the dining room table playing his favorite card game with another kid! I almost couldn't believe it as the minutes flew by while I watched Sasha immerse himself in a social interaction with another boy while a table full of food laid exposed in the adjacent room... it was as if there was no food around! Sasha was fully engaged in playing the game with the other boy (they have met a few times in the past but were much more engaged tonight than in the past) and didn't stop playing until about five minutes before dinner was to be served. At that point, the boys were kicked out of the dining room and Sasha came into the living room to eat a few of the appetizers. Then he went into the kitchen with the other kids (six in total) and served himself dinner (a moderate portion of lasagne, salad, bread). The adults ate in the dining room. After dinner, we all hung out and chatted and Sasha continued to hang out with the other boy. My friends remarked how different Sasha seemed ("he's socializing, he's not focused on the food!") and how different my husband and I were acting ("you seem so RELAXED, you're sitting still in one room and not getting up to follow him around!").
I was so pleased with Sasha's behavior at tonight's party and so was my husband (and he tends to NEVER be able to relax at any parties with Sasha). It was so lovely to see Sasha having a good time socializing with another boy his age, especially in the presence of tempting foods. Afterwards, Sasha approached me and told me himself that he was also very happy that he had such a good time at the party. He noted that he was having so much fun hanging out with the other boy, he was not even thinking about eating the food at the party. He also expressed interest in getting together with the boy again so they can "hang out" and play Magic cards together again.
Wow.
Tomorrow Sasha will celebrate his 14th birthday with three other boys (it's still hard for me to call them his friends- such a foreign concept that Sasha has actual friends!). He is super excited about his birthday party and acknowledges that it will be a "first" for him to be inviting kids that he has (mostly) befriended on his own. I am very much looking forward to seeing Sasha enjoy himself at his party. Hooray for new friends! I will post again if I end up having any more news to report post-birthday party.
61) Sasha gains weight! This anomaly begs the question, "why?"
Sasha had been showing steady weight loss since the beginning of September. On December 27, he weighed 70.1 kg and today (almost two weeks later), he went up by 1.5 kg! From outward appearances, he has continued with his lower, moderate appetite. This sudden weight gain requires that I don my detective hat to ask "why?"
There are three possible theories:
1. I cannot rule out "foul play" since there was one very recent discovery yesterday that he had stolen money from his dad's wallet which was locked (securely, we believed) in the cabinet! Although we have kept the fridge unlocked (of late) during the daytime, we continue to keep the snacks locked up in the cabinet. Sasha doesn't appear to be that interested in the fridge food and has done very well to mostly ignore the fridge unless it is snack or meal time.
When I checked the cabinet, I was only able to pull the door open about 5 mm... how did he remove a $20 bill from his dad's wallet from such a narrow opening??? Of course, there was also food in this cabinet so if he was able to take money from the wallet, he might have been able to take food. We caught the missing $20 bill before he could spend it (this time) but who knows how many times it happened before without our knowledge? When I questioned him about it, he maintained a calm stance and said that he was not able to get any food out of the small opening and that he had only gone into the cabinet once when he took the $20. When asked about why he took the money, he said that he just "wants to hold some money" since he is never allowed to have any money in his possession. In addition, his uncle ended up giving him a lot of change (totaling $50) for Christmas and although we got the change counted and turned to an Amazon gift card, he only needed a split second to pilfer some coins into his pocket. The other possible way he has accessed more food is by buying it in the vending machines at school. He has had only 3 days at school since returning from the break with a full time para-ed aide so it's unlikely but who knows? With the exception of the 3 days at school and the 2 hours at his card club on Saturdays, Sasha was never out of our supervision for two continuous weeks over the holiday break (doors are alarmed at night to prevent night time visits to 24 hour stores). We have asked Sasha about whether he engaged in any extra food sneaking and he appeared puzzled by the weight gain and denied having snuck any food over the last few weeks. When confronted by me, did not melt down into a puddle of shame and self loathing which is a good sign because in the past, the stronger the denial and indignation, the more guilty he was in real life. Of course, we really have no real way of knowing the truth but with time and patience, it might come out later.
2. We have relaxed a bit on the lower carb diet of late. I must admit that the recent results of his OGTT and insulin tests which showed that he is no longer hypersecreting insulin has also made me a little lax in sticking as strictly as before to his lower carb diet. Richer holiday foods were eaten in abundance and we went out to restaurants more frequently during the visit with relatives. It is certainly possible that he is not immune to gaining weight during a period of holiday (over)eating. I guess we have to give him the allowance to be a normal person (yes, even on oxytocin and naltrexone) who can gain weight during a period of holiday overindulgence.
3. He started testosterone injections 3 weeks ago and it may be that it has caused more muscle weight gain. I don't know enough about testosterone and its effect on body weight but from the little I know, increased muscle mass is one effect.
Perhaps all three factors play into the recent weight gain. Although I am surprised by the weight gain, I feel no need to panic. We will get back on more moderate eating (after his birthday party tomorrow!) and improve the security of the food cabinets and access to money. We are clearly not "out of the woods" yet with his problems and this weight gain may be serving as a warning to me that vigilance is still a necessary precautionary stance to take in the oxytocin/naltrexone experiment.
There are three possible theories:
1. I cannot rule out "foul play" since there was one very recent discovery yesterday that he had stolen money from his dad's wallet which was locked (securely, we believed) in the cabinet! Although we have kept the fridge unlocked (of late) during the daytime, we continue to keep the snacks locked up in the cabinet. Sasha doesn't appear to be that interested in the fridge food and has done very well to mostly ignore the fridge unless it is snack or meal time.
When I checked the cabinet, I was only able to pull the door open about 5 mm... how did he remove a $20 bill from his dad's wallet from such a narrow opening??? Of course, there was also food in this cabinet so if he was able to take money from the wallet, he might have been able to take food. We caught the missing $20 bill before he could spend it (this time) but who knows how many times it happened before without our knowledge? When I questioned him about it, he maintained a calm stance and said that he was not able to get any food out of the small opening and that he had only gone into the cabinet once when he took the $20. When asked about why he took the money, he said that he just "wants to hold some money" since he is never allowed to have any money in his possession. In addition, his uncle ended up giving him a lot of change (totaling $50) for Christmas and although we got the change counted and turned to an Amazon gift card, he only needed a split second to pilfer some coins into his pocket. The other possible way he has accessed more food is by buying it in the vending machines at school. He has had only 3 days at school since returning from the break with a full time para-ed aide so it's unlikely but who knows? With the exception of the 3 days at school and the 2 hours at his card club on Saturdays, Sasha was never out of our supervision for two continuous weeks over the holiday break (doors are alarmed at night to prevent night time visits to 24 hour stores). We have asked Sasha about whether he engaged in any extra food sneaking and he appeared puzzled by the weight gain and denied having snuck any food over the last few weeks. When confronted by me, did not melt down into a puddle of shame and self loathing which is a good sign because in the past, the stronger the denial and indignation, the more guilty he was in real life. Of course, we really have no real way of knowing the truth but with time and patience, it might come out later.
2. We have relaxed a bit on the lower carb diet of late. I must admit that the recent results of his OGTT and insulin tests which showed that he is no longer hypersecreting insulin has also made me a little lax in sticking as strictly as before to his lower carb diet. Richer holiday foods were eaten in abundance and we went out to restaurants more frequently during the visit with relatives. It is certainly possible that he is not immune to gaining weight during a period of holiday (over)eating. I guess we have to give him the allowance to be a normal person (yes, even on oxytocin and naltrexone) who can gain weight during a period of holiday overindulgence.
3. He started testosterone injections 3 weeks ago and it may be that it has caused more muscle weight gain. I don't know enough about testosterone and its effect on body weight but from the little I know, increased muscle mass is one effect.
Perhaps all three factors play into the recent weight gain. Although I am surprised by the weight gain, I feel no need to panic. We will get back on more moderate eating (after his birthday party tomorrow!) and improve the security of the food cabinets and access to money. We are clearly not "out of the woods" yet with his problems and this weight gain may be serving as a warning to me that vigilance is still a necessary precautionary stance to take in the oxytocin/naltrexone experiment.
Monday, January 2, 2017
60) Compassion (and a request of a favor from me)
To follow up from yesterday as a quick update- Sasha's OGTT and insulin levels came back totally normal. If he used to hypersecrete insulin before, he no longer does. I believe this is due to oxytocin and have cited literature (post #8) which describes oxytocin's benefits to metabolic health.
As I mentioned in my post from yesterday, I have been using this transition into the new year (as many have, I am sure) to reflect on the year. In doing so, I have felt deeply grateful for the chance to try oxytocin and for the chance (thanks to social media) to share our experiment with you all.
I have been thinking about the impact that we (you, as someone who reads the blog and shares info with others, and me, as the experimenter and writer) can make on the future of medical treatment for these conditions for which there have been inadequate treatment (at best) and in some cases, for which there have been no treatments made available. In the last several months since starting this blog, I have heard from several readers who have been able find endocrinologists to prescribe oxytocin. Unfortunately, there still aren't a lot of them out there (yet) but the drug trials are going on now and hope is in the horizon.
Because I announce my new posts on Facebook groups, I end up in e-conversations with those of you on FB who may share with me that you were able to find a doctor to prescribe oxytocin or that your child will be starting in the CHOP study, etc. Some of you have contacted me privately to share with me that you(r child) started oxytocin but has not seen any improvement. Here is where we could be of even more help to each other in crowdsourcing for a cure: whatever information you may have to share that might be useful for another reader (names of prescribing doctors, dosing of oxytocin that work or that don't work, etc.) PLEASE share it in my blog under the comment section. You may post anonymously, of course. As much as I would like to be able to mentally hold all the info that I have gathered from you all, I cannot do it and I can't always recall from which FB group I gathered certain helpful info. Also, Sasha is only one person with his unique physiology and body chemistry. For me and for other readers, it would be lovely to hear from other oxytocin experimenters so we could all learn from each other! Thank you all in advance.
Something else...
I have also been tracking the various nations from which you all originate and it is very exciting indeed to note that I have counted a total of 77 nations from all over the world that have read this blog. I have noted that some of the countries are in political conflict with the US and many of the countries have been in conflict with one another historically or even in the present. Well, there's nothing like the human condition (health problems, in this case) to unite us, is there?
Our compassion (literally, "suffering together") knows no boundaries and THAT, my friends, is a beautiful thing.
As I mentioned in my post from yesterday, I have been using this transition into the new year (as many have, I am sure) to reflect on the year. In doing so, I have felt deeply grateful for the chance to try oxytocin and for the chance (thanks to social media) to share our experiment with you all.
I have been thinking about the impact that we (you, as someone who reads the blog and shares info with others, and me, as the experimenter and writer) can make on the future of medical treatment for these conditions for which there have been inadequate treatment (at best) and in some cases, for which there have been no treatments made available. In the last several months since starting this blog, I have heard from several readers who have been able find endocrinologists to prescribe oxytocin. Unfortunately, there still aren't a lot of them out there (yet) but the drug trials are going on now and hope is in the horizon.
Because I announce my new posts on Facebook groups, I end up in e-conversations with those of you on FB who may share with me that you were able to find a doctor to prescribe oxytocin or that your child will be starting in the CHOP study, etc. Some of you have contacted me privately to share with me that you(r child) started oxytocin but has not seen any improvement. Here is where we could be of even more help to each other in crowdsourcing for a cure: whatever information you may have to share that might be useful for another reader (names of prescribing doctors, dosing of oxytocin that work or that don't work, etc.) PLEASE share it in my blog under the comment section. You may post anonymously, of course. As much as I would like to be able to mentally hold all the info that I have gathered from you all, I cannot do it and I can't always recall from which FB group I gathered certain helpful info. Also, Sasha is only one person with his unique physiology and body chemistry. For me and for other readers, it would be lovely to hear from other oxytocin experimenters so we could all learn from each other! Thank you all in advance.
Something else...
I have also been tracking the various nations from which you all originate and it is very exciting indeed to note that I have counted a total of 77 nations from all over the world that have read this blog. I have noted that some of the countries are in political conflict with the US and many of the countries have been in conflict with one another historically or even in the present. Well, there's nothing like the human condition (health problems, in this case) to unite us, is there?
Our compassion (literally, "suffering together") knows no boundaries and THAT, my friends, is a beautiful thing.
Sunday, January 1, 2017
59) Progress continues with behavioral improvements & do opiate antagonists potentiate oxytocin's effects?
The transition to the new year is a good time for introspection on the past year- providing a chance to reflect on events of the year including the changes, struggles, successes, lessons learned, etc. While we cannot deny that 2016 was filled with great conflict and tension for the US and world, it brings me relief and gratitude to report that 2016 was also a year filled with hope for Sasha and others who suffer from similar conditions.
We have had an uneventful holiday season (translation: "no disasters"). While we normally take a few days to go to the mountains with friends, this season we took a "staycation" and hung out at home visiting with friends or fun local venues. We also hosted our family visiting from out-of-town. During their stay, we left the fridge unlocked for the duration of their 3-day stay and ate out frequently, sometimes twice in a day. There were no meltdowns about food or any noticeable obsessiveness about food. In spite of the open fridge, frequent meals in restaurants, rich holiday foods, and increased sugary treats, Sasha has continued to lose weight- now down to 70.1 kg at 172 cm tall (154 pounds at 5 feet 7 and 3/4 inches tall).
On one occasion before Christmas, Sasha even baked and decorated 5 dozen sugary Christmas cookies (to give to neighbors) with his sister and I was NOT IN THE KITCHEN during their baking/decorating (and neither was Kitchen Bitch)! I did ask his sister how he did with the baking and she swears that she did not see any sneaky behaviors on his part. She has been (fortunately/unfortunately) trained by default to be very vigilant to Sasha's food sneaking so I believe her report that there was no "funny business" with the cookies. As I am writing this, I must admit that my absence during the cookie baking and decorating was already a significant event in itself since I would have NEVER (pre-oxytocin) allowed him to bake cookies without my strict supervision! This time, I was able to let go and relax in a way like never before.
In regards to his metabolic health, we are awaiting the results from a fasting Oral Glucose Tolerance Test (OGTT) with insulin to see if he hypersecretes insulin. So far, so good. I will post complete results after they trickle in.
While I was lying around today perusing the oxytocin literature, I came across a researcher (Steve Chang, Ph.D. at Yale) who studies neuro-endocrine underpinnings of social deficits/motivation and found that opiate antagonists (Naloxone, the injectable Naltrexone) enhanced the effects of oxytocin (more than with oxytocin alone or naloxone alone) on social attention and exploration (via mutual eye gazing) in monkeys. I found his results fascinating since I started Sasha on the opiate antagonist with the intention of having it help him decrease his sugar cravings, not with the intention of having it increase his social interactions. According to Dr. Chang, his lab is the first to document the potentiating effect of naloxone on oxytocin in regards to social interactions (and about to publish their results) although he pointed me to other studies that have shown the interaction of the two systems in the hypothalamus. Maybe we are getting a 2-for-the-price-of-1 deal here?!
Some papers on the interaction of oxytocin and opiate antagonists:
https://www.ncbi.nlm.nih.gov/m/pubmed/9776384/
https://www.ncbi.nlm.nih.gov/m/pubmed/2864649/
https://www.ncbi.nlm.nih.gov/m/pubmed/2855107/
http://www.nature.com/nature/journal/v298/n5870/abs/298161a0.html
https://www.ncbi.nlm.nih.gov/m/pubmed/2999285/
Speaking of social interactions, Sasha had his friend over to the house before Christmas to play their card game and it went well. He is going to reach out to the boy again over the weekend to see if they can get together again. He continues to attend the weekly get together to play cards. Also, Sasha is a New Year's Day baby and he will be having a birthday party with some friends from his card club next weekend. I can't even believe that I'm writing the word "friends" because he has really not had any peer friends that he made on his own for the past five years... more progress made, thanks to oxytocin/naltrexone!
Happy Birthday, Sasha!
Happy New Year, Everyone!
We have had an uneventful holiday season (translation: "no disasters"). While we normally take a few days to go to the mountains with friends, this season we took a "staycation" and hung out at home visiting with friends or fun local venues. We also hosted our family visiting from out-of-town. During their stay, we left the fridge unlocked for the duration of their 3-day stay and ate out frequently, sometimes twice in a day. There were no meltdowns about food or any noticeable obsessiveness about food. In spite of the open fridge, frequent meals in restaurants, rich holiday foods, and increased sugary treats, Sasha has continued to lose weight- now down to 70.1 kg at 172 cm tall (154 pounds at 5 feet 7 and 3/4 inches tall).
On one occasion before Christmas, Sasha even baked and decorated 5 dozen sugary Christmas cookies (to give to neighbors) with his sister and I was NOT IN THE KITCHEN during their baking/decorating (and neither was Kitchen Bitch)! I did ask his sister how he did with the baking and she swears that she did not see any sneaky behaviors on his part. She has been (fortunately/unfortunately) trained by default to be very vigilant to Sasha's food sneaking so I believe her report that there was no "funny business" with the cookies. As I am writing this, I must admit that my absence during the cookie baking and decorating was already a significant event in itself since I would have NEVER (pre-oxytocin) allowed him to bake cookies without my strict supervision! This time, I was able to let go and relax in a way like never before.
In regards to his metabolic health, we are awaiting the results from a fasting Oral Glucose Tolerance Test (OGTT) with insulin to see if he hypersecretes insulin. So far, so good. I will post complete results after they trickle in.
While I was lying around today perusing the oxytocin literature, I came across a researcher (Steve Chang, Ph.D. at Yale) who studies neuro-endocrine underpinnings of social deficits/motivation and found that opiate antagonists (Naloxone, the injectable Naltrexone) enhanced the effects of oxytocin (more than with oxytocin alone or naloxone alone) on social attention and exploration (via mutual eye gazing) in monkeys. I found his results fascinating since I started Sasha on the opiate antagonist with the intention of having it help him decrease his sugar cravings, not with the intention of having it increase his social interactions. According to Dr. Chang, his lab is the first to document the potentiating effect of naloxone on oxytocin in regards to social interactions (and about to publish their results) although he pointed me to other studies that have shown the interaction of the two systems in the hypothalamus. Maybe we are getting a 2-for-the-price-of-1 deal here?!
Some papers on the interaction of oxytocin and opiate antagonists:
https://www.ncbi.nlm.nih.gov/m/pubmed/9776384/
https://www.ncbi.nlm.nih.gov/m/pubmed/2864649/
https://www.ncbi.nlm.nih.gov/m/pubmed/2855107/
http://www.nature.com/nature/journal/v298/n5870/abs/298161a0.html
https://www.ncbi.nlm.nih.gov/m/pubmed/2999285/
Speaking of social interactions, Sasha had his friend over to the house before Christmas to play their card game and it went well. He is going to reach out to the boy again over the weekend to see if they can get together again. He continues to attend the weekly get together to play cards. Also, Sasha is a New Year's Day baby and he will be having a birthday party with some friends from his card club next weekend. I can't even believe that I'm writing the word "friends" because he has really not had any peer friends that he made on his own for the past five years... more progress made, thanks to oxytocin/naltrexone!
Happy Birthday, Sasha!
Happy New Year, Everyone!
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