86) BMI Chart: from pre-tumor diagnosis to post-oxytocin improvements

I have been documenting Sasha's weight loss in the blog since he started taking oxytocin on May 14. In my excitement and haste, I neglected to keep track of his height so the graph doesn't show the Body Mass Index (BMI) changes over time, only the current BMI. In my preparation for writing a case study report on Sasha's improvements with OT, I finally requested his BMI graph from his medical record so now you can see the actual BMI changes over time:

Sasha had his craniopharyngioma diagnosed and resected at age 8 (September 2011). You can see that there are a few outliers near age 6 and age 9 (where the question marks are pointed). At the first (?) mark at age 6 the BMI was likely plotted too high and the second (?) mark at almost age 9 was likely plotted too low; both points were probably just plotted erroneously.  Although there may be other outliers that were plotted in error (age 10), you can also see that for the most part up until age 12, Sasha's BMI was well over the 95%.

To our dismay, Sasha was recommended to follow a "low fat" diet out of surgery and this would (unbeknownst to us) end up having adverse consequences on his metabolic health and BMI. Some background to his diet recommendations: right out of surgery in September, 2011, Sasha had extremely high triglycerides: 7,300 (yes, you read that correctly- under 150 is normal, 500 and over is considered "very high").  Most physicians had not seen such high TGs before and it was alarming to say the least.  I can still remember the day the nurse drew his blood and it was bright pink with blobs of white fat in it.  I learned that they took his blood three times because they thought they must have mistakenly mixed up his blood for someone else's because they could not believe an 8 year old boy could have such absurdly high triglycerides.  When they came back at the same levels three times in a row, we were warned that he was at risk for developing pancreatitis. To prevent such an attack, he was made to fast for couple of days and this returned his TGs down to 1,400 or so.  We knew that he had a genetic predisposition for hyperlipidema and that the endocrine problems from his brain tumor would likely continue to make his cholesterol problems very difficult to manage. 

When we consulted a nutritionist, we were advised to keep him on a diet eating no more than 20 grams of fat per day.  We were also advised to avoid sugar (but avoiding carbs was not mentioned).  Although it was extremely difficult to do, we diligently charted his food intake and kept him to under 20 grams of fat per day.  We called this the "low fun diet" because it was that indeed.  Since he couldn't eat much fat, he was limited to eating foods like chicken and turkey breast, egg whites, non-fat yogurt, and lots of vegetables.  For snacks, we ended up giving him low fat/low sugar crackers, pretzels, etc.  Even on this low fun diet, we struggled to keep his TGs down in the 400s. Well, guess what?  A large part of his diet ended up being carbohydrates.  It wasn't until January 2015 when we consulted with Dr. Robert Lustig, pedi-endo and obesity researcher at UCSF, that we learned he was hypersecreting insulin and that carbohydrates were partly responsible for his hunger, fatigue, weight gain and hyperlipidemia.

ARGH!  We were so frustrated to learn that we had been ill advised after THREE years on the horrible low fun diet!  As soon as we received Dr. Lustig's advice, we made a drastic switch and changed his diet to a lower carb, low sugar diet.  We reintroduced fats and weaned him from his staple of crackers, bagels, cereal, rice, etc.  Well, you can see on the chart that after we started this new food regimen, (he had just turned 12), his BMI fell for the first time below the 95th percentile. His lipid panel also improved to mostly within normal range (including his TGs). We attribute this to the lower carb diet.  On the lower carb diet, we have tried to keep him to eating between 70 and 100 grams of carbs per day (usually high fiber vegetables, legumes, limited complex carbs and whole grains, modest whole fruit) and we were generous with fats and proteins (meat, dairy, eggs, nuts, olive and coconut oils).  We avoided processed sugar, most bread, starchy vegetables, pasta, rice, etc.  After the switch in 2015, although he was eating lower carb, it was not a low calorie meal plan- some photos of his typical lower carb lunches:

Mixed kale salad, salami/cheese, pistachios and berries

Cauliflower fried "rice", salami and cheese, mixed nuts/sesame sticks, carrots, plum

Also notable: all the while up until recently, Sasha was also sneaking food and did this with regularity.  With the exception of the food he snuck (for which he was caught attempting or successfully doing at least a few times a week at school, home, or in a grocery store), his eating was healthy and his calorie allowance was definitely NOT stingy (when I last kept track on Myfitnesspal.com a couple of years ago at the outset of the low carb diet, he was eating about 1900-2000 calories a day). 

The most remarkable changes on the BMI chart occurred after the mid-way point in his 13th year.  You can see that his BMI started to fall significantly.  We started experimenting with OT in May 2016 and with the experimentation, we believe the incorrect (too high) dose may have even caused him to increase his food seeking in the beginning.  We changed his dose to an every-three day 6 iu dose and although we saw some reduced appetite over the summer, we know he was still sneaking food on the side. He hit his peak weight in July 2016 (age 13.5).  It was when we got him on a daily 6 iu dose of OT at the end of August that his BMI just started to drop.  Today he is somewhere in the 86th percentile for BMI, a far cry from his 99th and above percentile from the old pre-oxytocin days! 

Have hope for HO!