Sasha is doing well overall. We have now had 6.5 years post tumor resection with our "new normal" and we've had about 18 months of using OT. We feel grateful that the he is medically stable (with high maintenance). His food drive is calm and mellow, he is doing well in school, has started a couple of new hobbies (electric guitar in a band and computer coding), and is rather content (maybe even happier than the average 15 year old boy?) in his life despite his many chronic medical conditions. Sure, there are still challenges (this goes without saying for those of us who are now "surviving surviving") but I feel the need to remind myself that Life is precarious and messy and that non-eventful/ordinary days are to be appreciated. In the past, my husband would text me on a daily basis, "any disasters today?" and we would celebrate these "non-disaster" days if we didn't get the dreaded phone call from school personnel on a given day... we'd rejoice if we didn't get any reports of his stealing food or getting into a power struggle at school over food. We continue with our unlocked kitchen and our relaxed attitude about food (no more policing) and it is indeed a relief since now he makes the entire family's lunches and helps with making breakfast and dinner while we stay out of the kitchen and let him do his thing.
After the completion of the case report, I relaxed a bit with my careful data collection of his weight and height. We still keep track of his weight for the purposes of estimating his water needs for his adipisic (thirstless) diabetes insipidus and I noticed that he has been creeping up in his BMI. It is not terribly noticeable on his appearance since he takes after his father's tall and muscular frame and since he is likely going through puberty changes into a man's body (he now weighs 183 pounds/83 kg and is 6 feet/183 cm tall). Of course, there are always other mitigating factors- we have also lowered his GH to an adult maintenance dose (from 2.0 mg/day down to 0.8 mg/day) so this will probably also increase his BMI.
I have been privy to read an accepted (to be published in the next couple of months) manuscript of a review article on OT's effects on feeding behaviors and it raised the question of OT's efficacy with chronic administration. With chronic administration of OT and the possibility of tolerance, I was advised that it might be a good idea to give Sasha a "drug holiday" from OT for 1-2 weeks, every 4-6 months. Apparently, doing so may allow the OT to resume effectiveness and possibly even at a lower dose. Sasha has been on OT at 6 iu/day for the past 18 months so perhaps this was a needed step to let his oxytocin receptors "rest."
Last week, we paused his OT and plan to restart it tomorrow (totaling a 10-day break). Interestingly, we did not notice any changes to his moderate appetite or food drive and even trusted him to attend his first high school dance on his own last weekend (and we even knew there would be desserts served!)- call it crazy, parental letting go, or trust- we did it and he came home reporting that it was a success- he said he had a lot of fun dancing and ate only one cookie!
Although we detect no change after taking this drug holiday, we will take it slowly and restart the OT and the tracking of his weight again. Our hope is that after the 10-day respite, the OT will keep his BMI stable.
Here's a picture of him taken today (serving the breakfast he made):
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