49) Trick or treat? Anticipating HO Monster's tricks on Halloween

Boo!

The holidays are upon us, starting with the most sugar-intensive one, Halloween.

While I love the tradition for its creativity (I have made the kids' costumes every year since they began trick-or-treating), it's become a dreaded holiday for obvious reasons.  Luckily, we have long practiced allowing the kids to keep only about a dozen pieces of candy to be eaten no faster than one piece per day.  The remaining candy [gets eaten by their dad (kidding...sort of) and] gets officially taken away by the "Pumpkin Fairy" who disperses the candy to "poor kids"- in its place, the PF leaves a non-food toy/book.

Now that the kids are older and no longer believe in things like fairies and Santa, we just allow them to choose a dozen pieces of candy, lock it up for safe keeping, disperse the candy up to one piece per day, and take the remaining candy to work.  We intend to keep the same practice for tomorrow but I am dreading the effect that the sugar may have on Sasha... Prohibiting all candy is out of the question so for the sake of providing a somewhat "normal" experience, we will allow him a limited amount per usual.  Even if we decided to disallow the candy, he will also likely be exposed to more candy at school with his classmates bringing candy in their lunches for the next several weeks.  Honestly, I don't believe there's much we can really do to run interference between candy and Sasha during/after Halloween and I am bracing myself for the re-appearance of HO Monster.  Since he has been exhibiting signs of continued food sneaking these past few weeks, I can only imagine it will get worse when the candy shows up in full force.

What better time, then, to add Naltrexone to our cocktail of drugs?  Ironically, it is a drug that is used to decrease the high as well as cravings for alcohol and opiates in addicts.  It has also been used, with some limited success, in treating people with binge eating disorder and has been shown to cause loss/decrease in appetite (mainly as a side effect of the drug).

Here is an academic scientific paper that describes the relationship between sugar and opioid intake:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3109725/

Here is a comprehensive summary (non-academic) of Naltrexone's possible impact on weight loss:
http://mentalhealthdaily.com/2016/04/30/naltrexone-weight-loss-what-should-you-expect/

We have returned Sasha to the 6 iu dose because his food seeking intensity was quite high in the last 2-3 weeks.  Rather than keep the 9 iu or increase the dose, we decided to return him to the 6 iu dose because we recalled how his food seeking became worse when he started in May/June on a too-high dose.  Additionally, we were warned by Dr. Jennifer Miller that using a too-high dose was not recommended due to oxytocin researchers learning that it could cause down regulation of oxytocin receptors, rendering them to become non-functional.  We will monitor him to see if we can lower the intensity of the food seeking back to his prior level (still seeking but with less intensity) and we are gradually adding Naltrexone to see if it will help reduce cravings.

P.S.  Trees continued to fall silently in the forest: Sasha's weight stayed stable this week despite his increased food seeking intensity.  We'll see what happens after Halloween...

48) Trees falling silently in the forest

We've got Sasha on a daily 9 iu dose of oxytocin from the pharmacy we used in September which was the month when we started to notice a drop in his weight.  He's had more weight loss over the week- from 74 down to 72.6 kilos in a week.   He was sick with the stomach flu last week which may explain the precipitous drop in his weight over the week.  I didn't notice any particular hyper focus on food over the week, likely due to his upset GI system.  However, I did find some Kind bar wrappers in his trash can over the week which led me to believe that he had been sneaking bars.  I even suspected that he had somehow gotten a hold of a copy of the cabinet/fridge key which caused me to rush off to the hardware store to replace the locks.  Ugh. I'm not sure what I hate more... getting into intense power struggles with him about food or getting along with him well and learning about surreptitious behaviors after the fact.  What a choice!

To my dismay he continues to act in sneaky ways around food.  Fortunately, he is somehow able to keep his food intensity private and avoid engaging in fights with me about it.  After finding out about the Kind bars that he snuck, I felt tempted to just say "f- it" and to just give him the box of Kind bars to keep for the week as his snack.  However, I don't think he is disciplined enough to pace himself and would probably eat up the box of bars too quickly.  Even so, if the oxytocin is doing something for his metabolism by helping him lose weight despite any extra food he sneaks, is there any real harm in allowing him the freedom to indulge?  If Sasha continues to keep his weight stable/lower, does that make us irrationally hyper-vigilant about his eating behaviors if we continue to monitor him so closely?  Although our oxytocin experiment is not intended to be about Sasha's weight loss (yes, I know I keep saying that!), Sasha is now approaching the weight he was when we started the experiment five months ago (and when he was at least 2 inches shorter).   If he continues to lose weight or even if he just keeps his weight stable, he may cease to be overweight...and wouldn't we look like food-Nazi parents if we continued to food-police skinny Sasha???  At what point do we trust and let go?

If a tree falls in a forest and no one is there to hear it, does it make a sound?

If Sasha "sneaks" extra food but keeps his weight stable or loses weight, did he really overeat?

47) Coping with the uncertainty of the oxytocin experiment and life in general

It's been a while since I've posted here- I last wrote about his new 9 iu dose which seemed to bring on a dramatic effect (decreased interest in food).  Since that time (13 days ago), we've noticed that the 9 iu dose has NOT been maintaining his lowered appetite.  In fact, we've noticed that his appetite has been pretty large once again. He had been losing weight steadily since early September but was up a little weight (.6 kilos) last week and was down a little (.3 kilos) this week. Again, his weight is not of great concern since he is not technically obese (merely on the high end of "overweight" according to the BMI chart) but it is a certain and measurable biomarker of his metabolism.  I continue to wish there were more accurate and reliable ways to measure his food consumption and his food obsession but we don't have a camera on him 24/7 and we can't read his mind so this wish is impossible to fulfill.  All we can really do is to continue with the exposure hierarchy and hope that the increasing freedom will lead to increasing trust...i.e.: his trust of his own hunger signals and ability to make healthy choices regarding quality and quantity of food and our trust that he can do these things without constant supervision from us or locks on the fridge and cabinets.

Due to his increasing appetite/focus on food, it has been challenging for me to practice the exposure tasks.   When I do, I find myself feeling tense and unable to let go of my policing stance with him.  I have these suspicious feelings that if I turn my back, he will grab some food and shove it in his pockets or slyly find a way to hide food somewhere for later consumption.  Argh!  It is not a good feeling and one that is based on my observation that he doesn't seem satisfied with the moderate amount of food that he used to be able to leave partly unfinished on his plate.  I know that part of the principle of doing exposure exercises is being able to tolerate the uncertainty of the task.  The phobic patient exposes himself to the discomfort of the feared stimulus (spiders, crowds, germs, etc.) and learns that his anxiety will decrease if he hangs in there long enough and practices often enough to see that there is no actual danger...in a similar vein, I have to endure the anxiety of not knowing how much food Sasha will need to eat before he realizes that his appetite is satisfied and that the sneaking/hoarding mentality is no longer needed.  If only living life were as simple as following psychological theories!  I guess I just have to press on and deal with my own anxiety about Sasha's temptations or we will not make progress. Gulp.  We have been trying different compounding pharmacies and will be going back to the one we used in September since he seemed to respond well to the oxytocin from that particular pharmacy.

Overall, Sasha is doing very well and we are grateful.  His health has been good. He is continuing to socialize at school during the lunch hour at the game clubs and went for the second time last weekend to the Magic the Gathering card game club.  His energy has been pretty decent which helps him enjoy school.  He feels much more organized this year with his classes and his grades are all As and Bs.  There haven't been any meltdowns in the last week or two.  His mood has been good.  I am grateful for all of these things.

I am grateful for the opportunity to conduct this experiment in the hopes of giving Sasha and others like him a less confined and more fulfilling life even if I don't know the outcome right now.  May I always be reminded that gratitude has the power to improve every moment of living, no matter how frustrating, confusing, or difficult.

46) Upping oxytocin to 9 iu daily to counter increased food intensity/appetite

In the last week, Sasha has had a couple of mini-meltdowns after being caught sneaking food (once at school in an opportunistic manner and another time at home when he broke the rules and snuck some extra nuts and salami during an exposure session).  His appetite appears to be increasing slowly over the last few weeks.  Interestingly, his weight has continued to decline despite his increased focus on food.  Nevertheless, I am inclined to see if increasing his oxytocin dose from 6 iu to 9 iu daily will help attenuate his increased appetite again.  I don't mind his having a robust appetite. However, I do mind getting into arguments with him about food and having to deal with a certain obsessive intensity that is reminiscent of the HO Monster... We'll see if the increase to 9 iu helps (or not)...

Well- I wrote the above paragraph in the morning and gave him the 9 iu.  Now it is 5:30 PM. I have no idea if the increased dose could be affecting him so quickly but he was definitely LESS focused on food today! Three good signs of note:

1) He ate a modest sized salad and half-grilled cheese sandwich for lunch and didn't seem to need more.

2) He had an opportunity to go grocery shopping with his dad and he ALWAYS goes when given the chance.  Today he was invited to go and he DECLINED.  I want to emphasize that this is the first time in five years that he has declined an offer to go shopping for groceries when given the chance- usually he BEGS to go and has a mini-meltdown when I tell him that I don't want to take him (due to his history of stealing and pocketing food at the store).

3) His sister is in the kitchen (as I am typing away on this posting) right now making a dessert.  Sasha is in his room doing homework.   I repeat:  Sasha is NOT IN THE KITCHEN while dessert is being made.  The Sasha we have known before oxytocin has always had a difficult time removing himself from the proximity of food.

When I remarked to him about how he turned down the chance to go grocery shopping and how he didn't mind having his sister bake without him, he was cool about it and merely said, "yeah, I just wasn't really in the mood- I wanted to look at my new Magic cards and get ahead on my homework for the week."

Here is what Sasha left unfinished on his dinner plate tonight.

Only time will tell if this increased 9 iu dose continues to help him have a more mellow and dispassionate attitude about food!

45) Socializing with his peers

My focus with this oxytocin experiment is mostly on Sasha's issues with his appetite and hyperphagia but I am also concerned about optimizing his motivation to socialize with kids his age.  His baseline personality is one that is outgoing, friendly and warm.  He is extremely chatty at times and can start a conversation with people (including strangers) in almost any situation.  However, his preferences are to strike up conversations almost exclusively with adults. This has been the case since he was a pre-schooler as I can recall many incidences of my 3 year old son usurping conversations away from me.  On one memorable occasion, I went out to lunch with my friend (Julie) and Sasha (who was 3 at the time).   My friend and I didn't see each other often so I was very much looking forward to catching up with her.  Rather than being able to have a conversation with her and having to keep my son busy with a toy or coloring book or something, I was having to watch my friend and Sasha chat it up while I sat on the side, trying to get a word in edge-wise!  After that lunch, my friend told me she thought he was a "metrosexual" because of how complimentary he was of her and how he liked that her "scarf matched her earrings," LOL!

Anyway, I think you get my point that Sasha is a friendly and social person (with adults).  Despite his naturally friendly personality, he has no (kid) friends.  It bothers me a great deal as I know how important friendships are (especially in our case since we have a teeny tiny family- besides his parents, Sasha has only one sister and one cousin, four aunts/uncles and no living grandparents- that's it).  He has not seemed to mind.  For the past five years, during non-academic times, he hangs out with his aides at lunchtime and hangs out with us (family) on the weekends.  We have tried to encourage him to meet kids and to make friends by joining activities such as bowling and chess and we socialize a great deal with our family friends on the weekends.  Still, somehow Sasha doesn't seem to get himself invited to birthday parties or to playdates with other kids.  In my observations and in the observations of teachers, Sasha appears mostly indifferent to kids his age.

Given that oxytocin is a missing hormone for Sasha and that he has had some social deficits in his disinterest in making friends and his lack of peer friendships, it is our hope that oxytocin might help increase Sasha's social motivation to befriend kids his age. There is a large body of research on the subject of oxytocin's relationship with social connection, bonding, trust, prosocial behaviors, affiliative motivation, etc. and it is frankly, very complicated to sort through due to the difficulty of isolating specific social behaviors and controlling for confounding factors such as anxiety. When I have more time,  I may write about this subject in more detail after reviewing some of the literature on oxytocin's role with social behavior.

For our purposes in regards to Sasha's social life, he has shown some improvement and interest in hanging out with other kids. For the last few weeks, he has been hanging out during lunch with some kids (including L) and playing Magic the Gathering cards. Today he was invited to a Magic the Gathering game gathering at L's house. L is the son of Sasha's dad's friend who once came over to our home over the summer for a dinner party. Turns out Sasha had a great time playing the game with the three other boys (all students at his middle school). He even said there were snacks served but that he was more focused on the game and it made it easier not to overly focus on the food. He also has had temptations to steal coveted cards (another reason I may end up trying Naltrexone one day) but was able to successfully resist his temptations.

Although it may not seem like a big deal to get invited to another kid's home for a social event, it is really a VERY big deal for Sasha. We are hoping that he can keep a friendly demeanor with this group, make good choices with resisting any impulses to take things, and be included and invited back next week when they meet again.

With his recent social invitation and successful encounter:

"It's one small step for kid-kind
One giant leap for Sasha!"