I'll get right to the point. Sasha had a relapse that we noticed last week. We think it started three weeks ago during the weekend he had some extra sweets-remember, the cake, ice cream and pie? Hindsight is always 20/20, of course, so in retrospect, I believe that it was the exposure to the extra sweets that probably set him off to start craving carbs again. Sure enough, in the last couple of weeks, we noticed that he was regressing to some of his old behaviors. One morning I found extra bread and crackers tucked away in his backpack. Another day, his after school teacher informed me that he needed some more intense monitoring around a track team end-of-the-year party (to which he was not invited), another teacher reported he had taken some potato chips from another child's backpack, and on a third occasion, I witnessed him sneaking some cookies into his pocket at a potluck function we attended.
When all of these things started to add up, I finally saw this as a regression to a version of his old behaviors. Interestingly enough, he was not displaying exactly the same behaviors from his pre-OT/naltrexone days. One reason it took us a few weeks to catch on was because he was continuing to appear sated- he did not finish all of his food on his plate, he would bring home unfinished lunch, and he appeared to be pacing himself with his (non-"carbolicious"- his dad's term) snacks. In his pre-OT/naltrexone days, his food seeking was less discriminating and he appeared to be much more anxious to eat anything (not just foods high in carbs).
I'm not naive to the idea that people eat for reasons other than to satisfy hunger- that is why I added the naltrexone. But it didn't work to deter his hedonic eating of carbs. Why not? That is a question that I do not know how to answer. After reading through some papers, I suspect that it may have to do with his broken hypothalamic-pituitary-adrenal axis (HPA) system (including but not limited to his adrenal insufficiency) and his brain's inability to engage the negative feedback loop that informs ACTH to stop producing cortisol when there is enough of it in the system. This is just my guess based on my layperson reading of the literature. The hedonic feeding system (mesocorticolimbic) is also involved in a complex manner with the HPA but I am, unfortunately, not educated in this area or smart enough to fully understand the complex workings of these systems.
I hope that someone else can help me understand these questions that have been raised in my mind as a result of his recent relapse:
1. What is the neurobiological difference between those with HO who have hyperphagia and those who do not?
2. Is Sasha's recent carb-seeking behavior related to a factor explained by his HO typology (as a person who engages in hyperphagia) OR is his recent carb seeking behavior better explained by a separate phenomenon of addiction (reward-pathway) behavior?
3. What is the neurobiological difference between someone with hyperphagia (Sasha's type) and an (drug) addict?
4. Why did naltrexone fail to deter him from carb-seeking and does his defective HPA-axis system have anything to do with it?
While I await some possible answers from the experts, I will focus my energy on helping Sasha get back on track with his eating habits.
As for how we are treating Sasha's regression: just like with an alcoholic/addict, we are considering it a relapse. In order to get the addiction cycle under control, we've decided to do a 10-day sugar/carb detox. For 10 days, we will attempt to clear the addictive cycle out of his system by "detoxing" him from foods that contain sugars and carbs. He is permitted to eat unprocessed foods including meat, non-starchy vegetables, nuts, cheese, eggs, and other fats (butter, olive oil, coconut oil). He is not permitted to eat anything made from flour, other grains (rice, oats, corn, etc.) all fruit, legumes, starchy vegetables, non-sugar sweeteners, and of course all types of sugar. We decided to optimize his willingness to participate by showing him some short educational videos on sugar addiction and the way to break the cycle. To our delight, Sasha was totally on board with it. He identified strongly with being a sugar/carb addict and said that he did not like the feeling and wanted to stop the addiction cycle. We are very glad that he is so willing to participate. Today, we are on day 4 (out of 10 days) and he is doing very well so far! His weight was creeping up little by little over the last few weeks (now we know why!) but in the last week, he lost .7 kg (1.5 pounds) thanks to this sugar/carb detox. After 10 days are up, our plan is to slowly reintroduce a modest amount of complex carbs (fruit, whole grains, etc.) but we will definitely be wary about those sugary foods! First things first- we need to get through these 10 days and they will be tricky because he will be attending summer camps and will not have the assistance of his para-educator aides as he did in school. Even on day 4 (today), he is already reporting that he is liking the way he feels and is relieved to be free of his carb cravings. We can only hope that he is motivated enough to keep up this regimen while being tempted by carby snack foods that will be served at camp.
Keep your fingers crossed for us, please!
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