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Saturday, October 28, 2017

102) Manuscript is still in the running (!); before OT and after OT photos

I've been away from the blog lately due to my work on the manuscript that I'm trying to publish in a highly reputable medical journal.  The first rendition of the manuscript was peer-reviewed with only minor concerns but was rejected due to its "low priority" ratings (due to its orphan disease status?). However, at the urging of my scientist husband, I made a strong case for reconsideration and the editors are now allowing us to resubmit a revised version in response to the reviewers' concerns . Apparently, it is not typical for the editors to reverse their decisions so I am cautiously optimistic about our ability to rewrite the paper so as to impress the reviewers/editors enough to reconsider publishing the paper.

I'm done revising the paper and am now waiting for my co-authors to look over my revisions.  In the meantime, we are continuing to cruise along.  Sasha continues to take a 6 iu/day OT spray and has been off naltrexone now for 14 weeks. His weight has stayed more or less the same (weight has increased slightly from the end of July- BMI was at its all time low then in the 79th percentile- now it is in the 81st percentile). Here are some photos (sorry for the photo-edited decapitation) of before and after OT:
Sasha before OT (July, 2016) with 
5 years of tight food supervision and locked kitchen
170 cm tall, 77 kg, BMI=96%

Sasha today after 62 weeks of OT with 24 weeks 
of loose supervision and unlocked kitchen access
180.3 cm tall, 73.1 kg, BMI=81%

His eating habits have remained moderate and he is able to exercise control over himself with our greatly reduced supervision and unlocked kitchen (now unlocked a total of 24 weeks)!  We have had very good reports from school regarding his food seeking behaviors- in fact, we weren't getting any reports (no news is good news) so we inquired and they reassured us that they were keeping close tabs on him and that they would report incidents if they had any to report.

When I re-read and think back to our lives before OT, I shudder with horror at the hell we had to live through for 5 long years.  The constant, unblinking vigilance, rapid weight gain, food obsession, kitchen locking, tearful episodes over food, food stealing, etc.  It was truly the bane of our existence. I know that many of you who read the blog are currently living through this hell.  It is my hope that the eventual publication of our report will enlighten more researchers and physicians to consider oxytocin as a viable treatment option for HO and hyperphagia so others can also find the relief that we have found.

I promise to work as hard as I possible can to get this case report accepted for publication and will update the blog when I get some (good) news.  Keep your fingers crossed!