89) Happy Mother's Day AND Happy Oxytocin Experiment Anniversary!

Today is special for two reasons and I feel that it is meaningful that both occasions share the same day today... the best mother's day present I could ever have is to see the success of this experiment!

From my observations of my son on oxytocin, here's what I've learned over the past year:

1. Oxytocin is a hormone that has benefited my son with weight loss, decreased food focus, improved appetite satiety, metabolic function (elimination of hyperinsulinemia), and improved social motivation with peers.

2. Oxytocin's effect on weight loss may be due to its triple role on:

• improved metabolic function (weight loss co-occurred with continued food sneaking and Sasha stopped hyper-secreting insulin after starting OT).
• improved physiological satiety/decreased caloric intake (Sasha reports feeling full with less food and stops eating when full) 
• improved psychological satiety/decreased food seeking/decreased caloric intake (improvements with physiological satiety have indirectly facilitated decreased food seeking due to psychological satiety. Having less anxiety after years of being conditioned to perceive food scarcity, OT has enabled him to engage in less food seeking).

3. Oxytocin's effect may be enhanced by the addition of naltrexone (opiate antagonist); our addition of (100 mg) naltrexone makes it unclear if oxytocin alone would have produced same effects reported above.

4. Raising the dose from as little as daily 6 to 9 iu have produced increased food seeking and moodiness (irritability and intensity)- from our experience, "less is more" with oxytocin dosing.  This may have to do with OT binding to vasopressin receptors causing increased aggression.

5.  Oxytocin is not a "cure all" for hypothalamic obesity with hyperphagia. It is a hormone replacement just like the rest of his hormone replacement medications.  DDAVP treats his diabetes insipidus by keeping him from desiccating from excessive urination but his DI still requires careful management (monitoring his ins and outs, checking sodium levels).  Likewise, oxytocin has been helpful for weight loss and diminishment of his hyperphagia behaviors but it is still important for us to ensure healthy food choices and to practice some management of access to highly palatable foods (sweets) that he will probably always crave.  Even on oxytocin replacement, Sasha will likely have a chronic vulnerability in the area of eating and obesity and this may require his lifelong vigilance.

6.  Sasha's aloofness to other kids may be a "thing" related to oxytocin deficiency. In the last year, Sasha has made one friend and has improved in his willingness to interact with classmates at school as evidenced by his daily interaction with kids at lunchtime whether during Magic the Gathering club or at Best Buddies.

and last but not least...

7.  There is DEFINITELY hope for the sufferers of HO.

We have experienced life-changing effects of this important neurohormone.  Sasha is now being tested with a completely unlocked kitchen, 24 hours a day... so far, so good! We remain excited as we embark upon our second year with oxytocin and hope that positive results from research will open the door to enable others to also experience this hope.