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!