On February 28, 2016, We consulted with an adult endocrinologist, Dr. Theodore Friedman from Los Angeles www.goodhormonehealth.com . He is one of the very few endocrinologists around who is willing to prescribe oxytocin despite the lack of studies on using it for people with panhypopituitarism. We were grateful and super excited to try it after months of my research and social networking on its potential efficacy for Sasha's conditions. Before starting it, we needed to get some of his other hormones optimally balanced (including DDAVP, hydrocortisone, growth and thyroid hormones) and then had him take an oxytocin deficiency test. After doing so and receiving the 24-hour urine test results (his levels were low, not surprisingly), Dr. Friedman ordered the oxytocin from a compounding pharmacy in San Diego (University Compounding Pharmacy). In April, the oxytocin arrived in the mail and it felt just like Christmas! Fortunately and unfortunately, Sasha was about to go on his Make-a-Wish trip to London, England, so we had to delay in the start of his oxytocin.
We had a fabulous time in London but we were really looking forward to starting the oxytocin. Finally after arriving home and getting over a cold, Sasha was ready to start oxytocin! On May 14, we gave him his first dose- we ended up receiving the sublingual melt in a 10 iu dose pill. Dosing for oxytocin is still not understood so we knew that we would probably feel like guinea pigs while we experimented with finding the correct dose. We started with one pill once a day and then increased the pill to twice a day after a few days. We expectantly looked for improvements and were hoping to see a decrease in his appetite and food seeking. Much to our disappointment, we did not see any changes that resembled improvements. We kept him on the sublingual melts for a couple of weeks but I got impatient. I learned from some oxytocin researchers that the pills could not be properly absorbed and that he really needed to try the intranasal spray if we expected to see some effect. I contacted Dr. Friedman and asked him to order the spray- we received it in the mail on June 3 and started it on June 4. The spray was a 6 iu dose and we started him on a once daily dose and increased it to 2 sprays a day after several days. Much to our disappointment, we noticed that Sasha's appetite was still the same.
I purposely did not tell his teachers that he was starting a new medication because I wanted to get unbiased observations on changes, if any. Well, boy, did I! Because it was so late in the school year, we were only able to try the oxytocin for the last remaining few weeks of school but two of his teachers told me on separate occasions that Sasha was more verbally defiant and belligerent, especially in regards to his hunger and insistence on eating. When I asked them how long they noticed these changes, they each independently said, "one month." We also had to admit that his food seeking seemed worse at home in the last month...
Gulp. Nothing else was different in Sasha's life except for oxytocin. Could it be that the oxytocin was making him worse?!
Feeling discouraged but not about to give up, I went back to some study and was fortunate to receive a link (from a PWS mom) to a webinar by Dr. Jennifer Miller (PWS champion endocrinologist) on a talk about her oxytocin studies for PWS kids. In this webinar, I saw that in some studies, certain higher doses of oxytocin caused an increase in tantrums and that this may have to do with the oxytocin binding to vasopressin receptors. I also caught an important hint from anecdotes of PWS kids who were being treated successfully with oxytocin in France. Each of these cases reported decreased appetite, increased pro-social behaviors and decreased anxiety and each of these four cases was taking their intranasal oxytocin (ranging from 4-18 iu) every 3 to 4 days, NOT daily! Since it was the only information I had with nothing else to lose, I decided that we would try it. The next day, we put reminders in our google calendar to space his 6 iu of oxytocin to one spray, every 3 days.
On June 20, after one week on the intermittent dose, we started to see positive changes...!
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