I have been reluctant to post Sasha's weight changes too soon due to my awareness that Sasha is capable to going both up and down in his weight and that short term fluctuations are not meaningful in the grand scheme of things. Changing lifestyle habits are not easy to do: "Quitting smoking" (according to the late comedian, George Burns), "is easy... I've done it thousands of times." Most people experience losing weight in similar ways- that weight loss is hard but keeping it off is even harder. Even so, I have corresponded with many cranios and others with HO who cannot lose weight despite their very best efforts through diet and exercise. As I've discussed in a previous post, perhaps Sasha has a milder version of the metabolic disorder whereas he is able to keep his weight from climbing steadily through strict policing and watching his carb intake. The next time I go see his endocrinologist, I will get a copy of his weight chart since his resection to check my memory but I believe his history of his BMI since his cranio diagnosis and surgery have shown him to be mostly topping the 99th percentile. I realize that providing a weight chart alone is not the most reliable way of studying his proportional size since he is a growing boy and some weight gain as he grows taller is normal and desirable. That said, I can tell you now that today, his weight is 74.0 kilos (163 pounds) and he was 170 cm (5'7") tall at his last doctor's appointment 1-2 months ago or so. According to the BMI calculator for boys, this puts him at the 25.5 and the 94.4% for his age (considered "overweight"). Personally, I find the BMI calculator too rigid as it doesn't account for muscle mass or general body build. Sasha has his father's massive muscular legs (tree trunks!) so if his legs were normal sized, his weight would certainly be lower. At this current weight, Sasha is at his all time lowest BMI since his brain tumor diagnosis and surgery.
The above chart documents his weight in kilos since starting oxytocin. I have summarized some of the remarkable events that have occurred during this experiment which may explain some of the weight fluctuations.
May 14, 2016
Started his first dose (10 unit sublingual pill)
May 16, 2016
Increased dose to 10 unit pill BID (twice per day)
During this time, we noticed no therapeutic benefit from the oxytocin. It was surmised that it was ineffective due to the method of administration so I requested Dr. Friedman to order the intranasal spray.
June 4, 2016
Began 6 iu spray
June 6, 2016
Increased dose to 6 iu in each nostril (12 iu total per day)
June 9, 2016
Two teachers gave independent feedback that his behaviors were worsening with increased defiance and insistence on eating. Both teachers stated that the worsening behaviors were happening for the last 4 weeks. We noticed increased food seeking episodes and meltdowns at home.
June 12, 2016
Began intermittent spacing of 6 iu every three days
Sasha made steady weight gains (half kilo per week) from May 15 until June 18. Between June 18 and June 25, he lost an entire kilo (this is the week we started noticing the appetite reducing effects of the oxytocin).
June 20, 2016
Sasha began to leave food unfinished on his plate and brought home unfinished food from lunch. He later told me that during this week, he had desires to "hang out" with other kids during lunch.
June 24, 2016
HEFY (Half-Eaten Frozen Yogurt) happened! On this day, he received his 6 iu dose and was able to leave food unfinished for every meal, including dessert. For the two days following HEFY, Sasha asked for unusual desserts (once it was baby carrots and another time it was peanuts).
July 4, 2016
Sasha did not ask for a snack in the late morning when he saw and heard his sister asking for a snack. This was the first time he neglected to obtain a snack when he was exposed to a food cue.
In the late afternoon, we attended a BBQ and he did not park himself permanently in front of the food table for the entire afternoon and evening. He was able to engage in conversations with others, play in the pool, and eat more moderately.
July 7, 2016
Sasha's weight precipitously increased two kilos and July 11, we learned that his thyroid was very low. On July 13, we started him on an increased dose of his T4 and T3.
On July 15, we found that he had a huge chocolate stash and that he was eating excessive amounts of chocolate. We do not know when the chocolate binging began but we are guessing (based on his precipitous weight gain between July 7 and July 11) that it started sometime in the first week of July. On August 5, we received his lab results that both his T4 and T3 levels have returned to being in the high-normal range and that he has lost 1.2 kilos (2.6 pounds) in one week. It is difficult to explain the ratio of which factors account for the weight gains/losses in July. The simultaneous discovery and solving of the chocolate and thyroid problems imply that both were responsible for the weight gains/losses, respectively.
August and September (to present)
His weight climbed again in August and we noticed increased intensity around food. We took several summer trips in August and food security was difficult to maintain and we believe that the lack of food safety posed more temptations for Sasha's food obsession/sneaking. We also surmised that the oxytocin had lost its effect (he was still on the every 3-day 6 iu dose) so we decided he needed a dose change and on August 15, his dose was raised to a daily 6 iu dose. After this dose change, Sasha's weight dropped again and then yo-yo'ed up at the very end of August. So far, in September, his weight has decreased.
I know many readers are very interested in the impact of oxytocin on his weight and although it is not our primary reason for conducting this experiment, it is definitely one of the primary reasons for many to want to try oxytocin! I am curious to see what will happen over time with his weight and I am also curious about the mechanism of weight loss (provided this is the trend over time)... Sasha's current appetite and eating pattern is observed to be moderate but not minimal. He eats moderately and sometimes even heartily but doesn't pig out. In fact, we just returned from a weekend away at a family camp where he even ate more carbs that he is usually allowed (indulged in some potatoes, waffles, pizza and even a cookie) and he STILL came back 1.3 kilos lighter than his last weight check 12 days ago! Interestingly, he also had excellent energy during the entire weekend in spite of the higher carb intake and the warmer weather. Go figure! Maybe oxytocin also helps with improving his metabolism? Or maybe I need to write and publish that book on "how to lose weight on holiday"!
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