Well, this is funny. Never in my life would I have predicted that I would ever be concerned that my kid with hypothalamic obesity and hyperphagia would lose so much weight that I would start to become worried he was "wasting away." No, he is not really wasting away but he has continued to lose weight steadily, 4 kilos or 9 pounds in 6 weeks. We even went to the Southern California Craniopharyngioma Picnic last weekend and purposely gave him more freedom to eat at his own discretion and he definitely took advantage of the picnic potluck to enjoy the higher carb goodies like eggrolls, crackers, and cookies there. Still, he lost two pounds (one kilo) in the last week!
For the sole purpose of breaking the sugar addiction cycle, we implemented the very strict ketogenic low carb diet for 10 days, after which we re-introduced fruit, legumes, and modest grains (oatmeal) back into his diet. We don't count calories and we leave the kitchen unlocked. We haven't been trying at all to reduce his weight so to my surprise, he has continued to lose weight even after we added back the complex carbs. Because we don't want him to keep losing weight, we will be adding even more carbs back into his diet. We don't want to start any extreme carb cravings (which could cause more intense food seeking/carb addiction) by doing this but we would like to ease up on our rigidity and give him a sense of normalcy. Heck, I badly need a sense of normalcy in the midst of our lives so limited by the constraints of his many medical conditions and treatments. Even if he does gain some weight from these extra carbs, his leaner body can now afford the extra pounds. We really, REALLY want to find the "happy medium" (if it exists) to keep him at a healthy weight, keep carb cravings at bay, AND allow him the enjoyment of a moderate amount of higher carb treats to decrease his sense of deprivation and increase his sense of normalcy.
I am certain that the lower carb diet alone is not responsible for Sasha's weight loss. Starting in February of 2015, Sasha began and was maintained on a rather strict lower carb diet (Under 80 grams of carbs per day). During these 18 months, he managed to lower his BMI from the 96th down to (the lowest ever since brain surgery) the 93rd percentile. By the time we found a therapeutic dose of OT, his BMI had crept back up to the 96th percentile. In the last 12 months on OT (9 months on OT and naltrexone), his BMI has fallen 17 percentile points and today his BMI is only 22.1 and in the 79th percentile. Testosterone was added in December of 2016 (right before his 14th birthday) and it may also be an additional boost to a leaner build with improved muscle tone.
Because I have been disappointed in naltrexone's failure to curb his hedonic food and non-food seeking, I am discontinuing the naltrexone to see if it makes any difference at all in Sasha's appetite, eating habits, food seeking, non-food seeking, weight, etc. This is the first week he has gone without naltrexone and we've not noticed any difference. It will be a matter of time before we know whether OT alone is the primary agent responsible for Sasha's improvements. Stay tuned.
No comments:
Post a Comment