The online publication of the case report has been out for a little over a month and I've been receiving a trickling of queries from a few people who have inquired into our dosing, side effects, etc. The medical community continues to be cautious about prescribing oxytocin; however, from the comments from some individuals, there have been a few physicians so far who have shown some interest. The report stands on its own but for the sake of answering some of the common questions, I will summarize my answers here. Before I do that, please note my disclaimer:
I am NOT a physician and I am NOT an oxytocin expert and I am NOT intending to prescribe an oxytocin dose for any patient. I am intending to simply describe what we have done and what we have learned from our experiences with oxytocin. For peer-reviewed research on oxytocin (though there is a dearth of info on dosing), please see post #8.
1. What OT dose was effective, how soon was it effective after you started OT, and how do you know it was effective?
We were advised to start with a low dose based on anecdotal data derived from some European PWS kids who saw anxiety and hunger-reducing effects on low doses of OT given on an intermittent basis. We gave 6 iu every three days and it appeared to lower his food drive. I have to say it "appeared" to lower his food drive because I don't know for a fact if he was sneaking extra food on the side and not being truthful when he exhibited reduction in his appetite. There was, in fact, a brief period of time in July, 2016 (before trying the daily OT dose) during which we discovered he was sneaking out of the house at 4 AM and stealing/buying large amounts of chocolate from the 24-hour grocery store. At this time, he was getting the every-three day dose. In my case report, I ascertained OT effectiveness by his weight loss since it is a measurable observation. If we use weight loss as the evidence of therapeutic effect, his steady weight loss was noticed immediately after we started the daily 6 iu dose. Because we were experimenting, it took a total of 3.5 months after starting OT (at various doses) before we found the "just right" dose of 6 iu/day.
For the reduction in his hyperphagia, it was a more gradual process which involved an exposure hierarchy- we gave him food freedom in a baby-step way (partial snack cabinet increased to full kitchen access over a period of weeks). I believe that people with HO hyperphagia are in survival mode and learn to use whatever means they can muster to survive (not starve). This includes lying, sneaking, stealing, and hoarding food. The end of homeostatic hunger does not suddenly end the survival behaviors and anxiety about not having enough to eat. Hence, we did not truly let go of our intense food monitoring and locking until seven months after we started to notice the weight loss effects and the beginning of Sasha's ability to appear more relaxed around having enough to eat.
3. Did he have any side effects to OT?
OT, like vasopressin, has antidiuretic effects, and has the potential to cause fluid retention. We actually welcomed this because my son has adipsia and is required to take a very large dose of desmopressin (0.2 mg x 18-20 pills per day) for his diabetes insipidus. My son's desmopressin dose, however, was NOT decreased as a result of starting OT. We did experience some increased irritability and food seeking when we increased his OT dose to 9 iu. Although it isn't possible to conclude that the higher dose caused these adverse effects, we lowered the dose and felt that it reduced these symptoms.
4. Why did you add naltrexone? How effective was it?
We added naltrexone after Sasha found and ate all of his sister's Halloween candy. I read up on the opiate antagonist's effects to deter cravings in alcoholics and opiate addicts and in some "food addicts" (binge eaters). Post #8 lists some research papers on naltrexone and Contrave, the weight loss medicine that is a combo of buproprion and naltrexone. In sum, I don't believe naltrexone did what I hoped it would do- to deter his cravings for sweets- alas, if it could do that, wouldn't we have already cured obesity?? The biological theory for naltrexone's failure to decrease sweet cravings in Sasha is described in the discussion section of the case report as being due to his broken HPA- axis/panhypopituitarism (this is an explanation in a nutshell- please read the paper if you want more nitty-gritty neuroendocrine details). However, I did learn that opiate antagonists like naltrexone DO act to potentiate OT's effects so perhaps naltrexone is helping boost OT's effects on his homeostatic hunger and energy balance?? All in all, I believe that naltrexone is an adjuctive treatment to OT which is why we put him back on it (100 mg/day) after taking him off it for several weeks.
5. Were there other positive effects besides the ones affecting his weight and appetite?
Yes, I believe that Sasha improved in increasing his social motivation. Before OT, he had absolutely no interest in having peer-friends. He liked talking with adults but really didn't have any friends his age and didn't seem upset about his lack of friends either. Since taking OT, he has made a friend on his own and expresses more interest in having friends his age.
By the way, Sasha continues to be doing well. He is now 183 cm (6 feet) tall and weighs 77 kg (170 pounds). He just turned 15 on January 1st!
Please don't hesitate to contact me if I haven't answered your questions and if you or your physician have other questions about our experience.
