It has become apparent to me that the naltrexone has not been doing what I hoped it would do- that is, to help deter his impulsive/compulsive behavior re: hedonic food and non-food seeking (there has been regression with his taking of non-food items as well). As I have already mentioned, I believe that OT/NAL has been beneficial for his overall metabolic health- better satiety, weight loss, decreased obsession/anxiety re: eating. He had even been handling the unlocked food cabinet just fine. But then the sugar overload happened which may have triggered a vicious cycle of wanting more carbs, eating more carbs, wanting more carbs, etc. I don't know for sure why the OT/NAL treatment has been working for non-high carb foods but has not been working for hedonic (carb) food/non-food seeking. Of course, there are many (overweight) people (regular folks who do not have PWS, panhypopituitarism, or brain tumors affecting their HPA-axis system) who have problems controlling themselves around sugar and carbs so perhaps his behavior is not out of the norm?
What would happen if we discontinued naltrexone? Would his appetite/food seeking get worse, stay the same? What is the optimal outcome I can expect from OT? I have more questions than answers and I will continue to plug away at the experiment to try to understand what is happening on a scientific level. I may end up discontinuing naltrexone after a few weeks when he is back on his baseline diet (currently on a sugar/carb detox which ends tomorrow) to see if there is any effect but that is a topic for another post. My many questions remain unanswered at this point and despite my best efforts to understand, I do not have the answers. For these reasons, I know that I cannot rely on chemicals or scientific journals alone to manage them.
Once again, I turn to the Serenity Prayer: "God, grant me the serenity to accept the things I cannot change; the courage to change the things that I can; and the wisdom to know the difference."
What is changeable? I believe that I have been working hard on changing what I can- providing a healthy diet, education about nutrition, emotional support, cutting-edge experimental medicines informed by my research efforts, psychotherapy, coping tools, and a secure and well-supervised home and school environment. When he had his recent relapse, I made a plan to detox him from sugar and carbs and we are now nearing the end of the 10-days. After tomorrow when the 10 days are over, we will begin to gradually add back complex carbs (whole fruit, then modest servings of other complex carbs like steel cut oats, sweet potatoes, legumes) and hope to get him back on track with his previous regimen including stocking the house with these complex carb food items again and keeping cabinets and fridge fully unlocked. These are the things I can control and that I intend to continue for Sasha.
What is unchangeable? A lot! I cannot control Sasha's feelings, urges, choices and behaviors. I cannot control the environment in which he finds himself outside of home (school, friend's houses, camps, etc.). I cannot control his exposure to tempting items in these various environments. It is sometimes hard and humbling to admit these things but it is necessary to do so in order to have a degree of sanity- I tell my patients that a sure fire way to keep feeling frustrated is to continually try to change feelings/things/situations/people that are not within one's control to change. Acceptance does not require one to like or condone the situation. Acceptance only requires that one see reality for what it is in the moment... "it is what it is."
Even as I write this, I am struggling with this very act of acceptance. I guess I have been trying to practice the opposite of the serenity prayer- by "changing the things I cannot accept" rather than accepting the things I cannot change. For now, I intend to continue to do everything in my power to "change the unacceptable" but I also know that I need to learn about accepting things I cannot change. If only I had the "wisdom to know the difference."
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