Hello! It's been a long while since I've blogged here. During this absence, I've been writing the case report and getting it ready for publication in a clinical endocrinology journal. I submitted it last week and it is now "under review." We are crossing our fingers and I hope to share some good news with you all if it gets selected for publication.
Now that Sasha has been on a therapeutic dose of oxytocin for over a year, I believe I can conclude that it has been a successful experiment. My original treatment goals were to decrease his hyperphagia in order to normalize his relationship with food and to improve his socialization (increase social motivation and friendships). Our lives now are vastly improved compared to the old days of living with the stress and dread about keeping all food under lock and key, limiting access to social events, and having to keep an unblinking eye on him when he was around food. Sasha's steady and sustained improvements have allowed us to loosen up on his supervision and now he walks to and from school by himself. So far, we have not detected any signs of food sneaking. He still has an aide at school and they do keep a close eye on him (part of his IEP) just in case his food sneaking returns, but so far, no reports from the school about any "disasters"- we are happy and relieved about this! As for the goals regarding socialization, he has kept up with his friendship with his buddy and they continue to see each other on the weekends. He has also begun to join some social clubs at his high school (robotics, Best Buddies, card and board games, etc.) so we are hopeful he will be able to make some new friends at school.
His dose has been steady at 6 iu/day intranasal oxytocin and we haven't missed the naltrexone (stopped before the end of July) to date. At home, he's been observed to have the same eating habits and we still keep to a low-ish carbohydrate diet (100 grams of carbs/day, give or take). I have been even more lax about supervising his food and eating since the beginning of school. In fact, I have not once supervised or even seen what he is packing in his school lunch. We keep the kitchen stocked with healthy foods that Sasha enjoys and he appears to be handling his free access to the kitchen without a problem; the fridge and all cabinets remain unlocked 24 hours a day and the Kitchen Bitch hasn't been around...! I am trusting that he is making good choices about his food selection and eating in moderation. We do indulge, on occasion (3-4 times per month), in a sweet treat and so far, it has not led to any problems. Lastly, if his physical appearance is any indication of his choices, he's doing a good job because he looks and feels great at 5'10.5" and 160 pounds (179 cm, 72.5 kg).
Regarding oxytocin's social bonding function, last Saturday I had the great privilege to meet and spend the afternoon with Dr. Sue Carter. She is the scientist who discovered the bonding properties of oxytocin in her seminal work on socially monogamous prairie voles and is currently the director of the Kinsey Institute. Sharing a couple of articles about her work- the first is written by her and her husband, Stephen Porges (another internationally celebrated scientist, widely known for his Polyvagal Theory). The second is an article and interview written by their son, Seth Porges, journalist. The third paper explains oxytocin's role in the evolution of human behavior.
1. The biochemistry of love: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3537144/
2. Seven things you didn't know about oxytocin: https://www.forbes.com/sites/sethporges/2016/02/12/7-things-you-probably-didnt-know-about-oxytocin-and-the-science-of-love/#bd37080670b3
3. Oxytocin Pathways and the Evolution of Human Behavior: http://ccare.stanford.edu/wp-content/uploads/2013/09/Oxytocin-Pathways-and-the-Evolution-of-Human-Behavior.pdf
Dr. Carter has shown interest in our experiment and has been very supportive to me over the last year so it was a great honor to finally meet her. Talking with her has inspired me to continue to learn more about oxytocin and to understand other untreated conditions (social impairment, compulsive behaviors, anxiety, etc.) that may be connected to the impaired oxytocinergic system of people with pituitary/hypothalamic tumors. I am very excited about a research study that is launching from Stanford University on this subject and will post more info about it after I gain permission from the principal investigator.
