Thanks to Sasha's history with food seeking and all the trouble it has caused in our lives, my husband and I have a habit of asking each other, "any disasters today?" when we check in with each other at the end of the school/work day. It is always a welcome relief to learn that there were "no disasters" (no meltdowns about food, no incidents of stealing or lying about stealing food, no reports from teachers about sneaky or suspicious behavior, no fights between HO monster and Kitchen Bitch, etc.).
Well, this entire weekend turned out to be a "disaster-free" weekend! If you've been following along with the blog, you have probably noticed that I have been writing about some of the successes we've experienced regarding Sasha's weight loss and improvements in his metabolic health. While that is all good news, what is nearest and dearest to me, however, is my desire for Sasha to have a normal relationship to food and to life, irrespective of his weight. Recently I have had some conversations and email exchanges that have made me realize that some people may be wondering about my dedication to trying to solve the HO puzzle for my son when he is not even morbidly obese like so many other sufferers of this scourge. In fact, some may even question whether he has Hypothalamic Obesity at all since he is just at the cusp of being "obese" (his current BMI is 25.7 which puts him at the 95% for boys his age).
It seems to me that among HO sufferers, there is also quite a bit of variability along the continuum of weight gain. On the extreme end, I have certainly heard of cases of some cranios who seem to gain enormous amounts of weight at a rapid and steady pace even when they subsist on celery and eat like birds. Some of these HO sufferers don't feel excessively hungry so it is not necessarily that hard to resist the food but it has got be a horrific life experience and feel so absurdly unfair to gain weight so rapidly when one is eating so little! Although Sasha has mostly been considered obese (over the 99% in BMI) since his cranio resection, the relentless weight gain has certainly NOT been the case for him. We consulted with pedi-endo Dr. Robert Lustig at UCSF once and he even wondered whether or not Sasha was even a sufferer of HO; after all, he apparently has been capable of keeping his weight relatively stable with lifestyle management (diet and food policing) plus optimizing his thyroid replacement medications (both T4 AND T3). None of us (including Sasha, for the most part) mind the lower carb diet (save for the restriction on chocolate) but as I have described numerous times throughout this blog, the food policing is a complete bummer, understatement of the decade.
In my conversations with other patients and caregivers of patients with hyperphagia, I am writing about this tonight because I have become aware that some endos have not taken this problem seriously enough and have mostly paid attention to the metabolic issues (i.e. obesity and its associated problems) but not the "behavioral problems." As I have noted in an earlier blog post, I do not believe in the false dualism of "mental health problem" versus "physical health problem" (especially in the world of endocrinology) and I feel very strongly that categorizing hyperphagic symptomatology (caused by a damaged hypothalamus) as merely a "behavioral problem" or punting these symptom over to psychiatry to attempt to solve is shortsighted at best, and medically irresponsible, at worst.
Whether Sasha is a bona fide sufferer of HO or not (apparently, different endos have differing opinions on the diagnostic criteria), he has certainly suffered (as have we) from his relentless obsession for food which has driven him to distraction and has made him resort to chronic deceit in the way of lying and stealing. Only those who have hyperphagia or lived with hyperphagic loved one can understand the tortuous enslavement to food- to be chronically hungry and constantly obsessed with the thought of food... Where can I get some more food? How can I get it? What will I get? When can I get it? According to Sasha, it consumed him mentally and made it hard to think about anything else. Of course, since his mind was so preoccupied with food, it also made it hard for him to have other interests outside of food.
Well... getting back to his "disaster-free" weekend... we are always grateful for any and all days that Sasha is able to enjoy his life without hyperphagia-related disasters. Perhaps we can thank oxytocin's therapeutic effect for this weekend: not only was it disaster-free, but he was even able to enjoy TWO social outings this weekend! The first social event was on Friday night when he joined another boy (the one he met earlier this summer at our home) to play Magic the Gathering cards at a local game store. He had a great time and reported that he managed himself without giving in to any temptations (dad was there to check on him intermittently). He very much looks forward to attending the next game event and hopes to find his new friend on the school campus. Having Sasha show interest in 1) something that is not food-related and 2) wanting to hang out with a peer are both big deals and we are so happy that he may be in the process of making a friend with a boy his age! The second outing was with his friend, M. M is a friend who has graciously been sharing her dog with our family and today, M and Sasha went out with her three golden doodles for a walk in the afternoon. As usual, Sasha had a great time with M and her dogs and got plenty of exercise to boot!
Tomorrow is the first day of 8th grade so let's keep our fingers crossed and hope for more "no disaster" days!
When you wake up in the morning, and the first thing you think of is what you're going to eat. When you wonder what's for lunch, snacks, dinner, breakfast the next day... When you are clinically anorexic because of your pediatric endo practically yelling you're too fat, and you still don't lose weight...
ReplyDeleteIt's a fight, even now as an adult.