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Wednesday, October 24, 2018

117) Progress continues with Sasha and the case report

It's now been over two years since Sasha has been on oxytocin (+ naltrexone) and he is continuing to do well.  His former lower carb eating plan has become increasingly lax... it seems that having a slice of toast with his eggs in the morning or rice at a Chinese restaurant or a pizza dinner has not made any impact on his weight.  Relaxing the carb restrictions has made for a more mellow lifestyle in our family.

The most impressive improvements of late in Sasha have been around his ability to manage his weight even with his own spending money.  Before oxytocin (and for the first 18 months into the experiment), we never dared let him have any spending money for fear he would spend it all on junk food and gain excess weight on it.  At the end of his freshman academic year (May-June, 2018), he was given the privilege to carry money to school to spend it how he pleased. We knew that he was going to have to learn how to handle money and all the sugary temptations out in the world so we decided it was important for him to learn about it sooner than later. Well, as we predicted, he took full advantage of this new privilege and bought cookies at school, perhaps even every day. Not surprisingly, he gained weight from all the cookies he was eating.  He liked the cookies, but not the weight gain. During the summer being away from the cookies at school helped him level out his weight and he even lost a few kilos on our active summer trip to Europe in late June/early July and throughout the summer.
Photo of Sasha taken yesterday:
Age 15: 6 feet, 1/2 inch tall, 170 pounds

Sasha started his sophomore year in September and so far, he has been able to exercise better control and discipline around his cookie buying habit. Somehow he has made decisions to refrain from the cookie buying and when I asked him how or why he doesn't buy cookies, he says, "because I don't want to gain the extra weight."  Sasha is now 184 cm (6'0.5") tall and 77.3 kg (170 pounds) heavy and his BMI is 22.8. After losing the extra cookie weight in the summer, he has kept his weight in this range since August. I know that he is (aren't we all?) always at risk of succumbing to the seduction of cookies so it will be something that I hope he can manage with moderation.  So far, he seems to be doing a great job and I am impressed.

I am also pleased to report that so far, our JCEM case report has been cited five times in other peer reviewed journals: https://scholar.google.com/scholar?um=1&ie=UTF-8&lr&cites=3043971027459005670.  The review articles all point to the lack of effective treatment for HO and I am now trying to get a Letter to the Editor published in one of these journals to address this problem. Although I have already been turned down by Endocrine Reviews (they have a policy of only publishing Letters to the Editor that point out major errors in previously published materials), the kind and supportive note from the Editor-in-Chief has left me feeling encouraged about continuing to try with other journals. It is my intention to piggyback on our report and to share that my son has continued to reap the benefits of oxytocin and naltrexone to enjoy a normal relationship with food and a normal weight. I hope to convey my belief that the dearth of effective treatment options and  the poor quality of life of HO sufferers begs for an open-minded approach to treating this challenging condition and that I hope more endocrinologists become willing to try more cutting edge approaches (such as oxytocin) with their HO patients.