115) Good nutrition and a healthy lifestyle: a must for living with HO

Since the publication of our JCEM case report a few months ago, a handful of HO patients have been able to convince their physicians to try them on it and I've heard some happy stories of good outcomes.  However, it's become apparent to me that for most sufferers of HO,  getting a prescription for oxytocin is not possible now, or at least not easy. Medical research moves at its cumbersome pace, alas, and it feels impossibly slow for those who are suffering from syndromes lacking treatment.  I am still hopeful that oxytocin will become more readily available once larger studies can demonstrate its effectiveness.

Although oxytocin (plus naltrexone) were the agents of change for my son by reducing and normalizing his appetite, increasing his metabolism, and reducing his weight, I also know that his health has been substantially helped by our food plan, a lower carbohydrate lifestyle.

Some history: after Sasha's craniotomy surgery to resect his large craniopharyngioma in 2011, he had alarmingly high lipids including triglycerides (TGs) which were 7,300.  After fasting for a couple of days, the TGs dropped to 1,400. He was gaining weight quickly and he had an obvious intense and constant appetite. Unfortunately (unbeknownst to us at the time), we were given (bad) nutritional advice by a team of nutritionists and physicians. They advised that Sasha should eat a low calorie, low fat, low sugar diet.  For the fat restriction, they wanted him to eat LESS THAN 20 GRAMS of fat a day.  They warned us that his lipid profile and obesity put him at risk for pancreatitis, fatty liver, etc.  Well, for over three years, we kept his fats under 20 grams a day and it was awful.  We called his diet the "low fun" diet.  If you can't eat fat or sugar, what's left? Well, he was allowed to eat low fat proteins so he ate egg whites and a lot of turkey breast (so much so, he prefers to avoid turkey now, lol). Strangely, we weren't told he couldn't have other carbohydrates so we ended up giving him vegetables, of course, but we also fed him crackers, pretzels, pasta, rice, etc.  Well, after eating in this manner, wouldn't you know it- we continued to struggle to keep his TGs under 500 even though he was eating almost no fat.  He was still obese and he tended to fall asleep frequently during the day.  Although we locked up the kitchen and did our best to supervise him closely at home and at school, he continued to steal food whenever he had the chance.

In 2015, I pushed our health plan to refer us to one the world's experts in hypothalamic obesity, Dr. Robert Lustig.  Dr. Lustig was working at University of California in San Francisco (UCSF) hospital as a pediatric endocrinologist and had written extensively on HO.  It was from Dr. Lustig that I learned about the term "hyperinsulin secreter" and was advised that Sasha radically change his diet to a low carbohydrate plan and that we could introduce fats back into his diet. I did as instructed and noticed improvements in Sasha- his lipid panel improved and he lost some weight for the first time. He continued to attempt to steal and stash food, however, and this prompted us to try oxytocin (and the rest is history, they say!)

Sasha is a fan of kale and isn't afraid to advertise it!

Thanks to our lower carb lifestyle and after adding oxytocin, Sasha is at a healthy normal weight, his metabolic health is good (including his lipid panel), he no longer hypersecretes insulin (as evidenced by his last glucose tolerance -with insulin- test and his lack of sleepiness after eating), and we no longer live with a locked kitchen. Since returning from a holiday in Europe after we saw that he could tolerate more carbs and still lose weight, we are more liberal with him these days and allow some higher carb foods (e.g.: pasta) on occasion; however, we still stick to eating whole foods and eat as little processed foods as possible.  We also still strive for healthy fats and high fiber in our foods and continue to be mindful of carbs. The entire family eats in this fashion so Sasha feels supported and so that there is uniformity in our family's lifestyle...unless you count the times I "cheat" when I go out to lunch with my friends : )

All of this is to say that I am excited to share some news about an upcoming book, Hungry for Solutions, by Marci Serota, Registered Dietician Nutritionist. In her book, Marci shares her story about her own son (also a craniopharyngioma survivor with HO) and how he successfully battled HO and hyperphagia with her nutritional and lifestyle plan. Although I learned about the lower carb lifestyle from Dr. Lustig, I have had the privilege to preview Marci's book and agree wholeheartedly with her nutritional guidance and the hopeful message it sends: even one of the most pernicious forms of childhood obesity can be tamed with healthy eating.  Marci's book is coming out in November, 2018 and if you are interested, you may order it in advance and at a discount through her website: https://cranionutrition.com/. Check it out also for recipe ideas, foods to avoid, how to read a nutritional label, and other helpful topics!