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Friday, July 14, 2017

96) The ups and downs of the Oxytocin Experiment

There are always ups and downs in life.  Of course, we were hit hard with the downs of life after being violently struck with the diagnosis of craniopharyngioma and its insidious sequelae of diabetes insipidus, adrenal insufficiency, visual impairment, hypothalamic obesity, etc. We have tried to beat back hypothalamic obesity with oxytocin and naltrexone and yet the ups and downs persist like a seesaw.

The "down" (bad news) is that Sasha still has a hard time resisting his urges to find and take highly palatable foods (read: high carb/sugary treats).  I mentioned this opportunistic hedonic food seeking already in post #94.  I maintain that he seeks these types of treats in the absence of hunger because he has no problems eating "non-carbolicious" foods in a moderate way.  All foods in our home are easily treated by Sasha in a totally normal way; he enjoys food and yet he can leave meals unfinished when he is full, he can eat moderate snacks at appropriate times, he can have a mellow attitude around food in general.  In case you might be thinking that the only food we keep in our home is broccoli and kale, think again- although we eat a healthy lower carb lifestyle, we do keep lots of palatable foods around that Sasha likes: peanut butter, almond butter, fresh fruit (peaches hanging on trees and berries dangling on bushes in our backyard!), cheese, nuts, bacon, and homemade treats he makes with coconut flour, almond flour and erythitol.  The only foods he craves and seeks are junky foods like cookies, chocolate, etc.  We'd love to offer him the occasional splurge on high sugar foods but history has shown us that when eats sugar, it creates a vicious cycle of sugar addiction- and this is definitely something we want to avoid!  We are currently working on trying to strike a healthy balance between a healthy low carb lifestyle WITH access to occasional treats and hope that this balance is possible to achieve given his history of "carboholic" tendencies.

The "up" (good news) is that despite his opportunistic food seeking, Sasha continues to lose/maintain his lower weight.  This week, he lost an additional 1 kg/2 pounds from last week.  I never thought I'd ever say this about my kid with hypothalamic obesity, but he is no longer even considered "overweight" since his BMI is now in the 82nd percentile. I really think he is at a very healthy weight and should not lose more weight.  While I am disappointed that he continues to engage in high carb food seeking (an indication of his poor impulse control), I am thrilled that it is done in the absence of hunger and that the OT/NAL has certainly done its job by helping him reduce his problems with excess hunger and poor satiety.

And so it goes... the seesaw effect is alive and well in life and with the oxytocin/naltrexone experiment.  I am working on finishing my manuscript about our experiment and hope to publish it in the medical literature soon so that others may know that the excessive hunger and obesity of HO is most definitely responsive to treatment with oxytocin and naltrexone.

6 comments:

  1. I just found this blog and I am very very interested! My life is yours and truely, what you are doing is amazing! Are there any long term side effects of oxytocin? I have a good team of doctors working with my son so if I present this as an option I want to know what I am up against. I live in Canada .... My son is 2 years post op.

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    1. Thanks for your interest and for your comment. There are no known long term effects of oxytocin because it is new and experimental. The short term side effects include water retention since it is also an antidiuretic hormone like vasopressin. We haven't encountered any problems with it as an ADH since my son has a severe case of diabetes insipidus and we would welcome the ADH effects but his DDAVP dose has stayed the same after he started Oxytocin. Please see post #8 for published papers on OT.

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  2. This is incredible for Sasha and others. Two years ago who would have guessed Sasha would be relieved of constant hunger and subsequent inability to focus on other aspects of his life. Amazing reward for mom's total dedication to do everything possible. While there are "downs", that is disappointments, that everything is not solved ... the quality of Sasha's life from here is on an entirely new plane. He can now be present with full attention for what is happening in his life much of the time without worry about how he will find food (MS, friend of Sasha who has observed the difference)

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    1. Thanks, MS, for your comments. May I say that we have been so touched by your interest in and care of Sasha. We are truly blessed to have you in our lives.

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  3. I haven't read all of your posts, could you help answer a couple of questions?
    1. Are you in a clinical trial?
    2. Where do you get the Oxytocin? (If not clinical)

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    1. No, not in a trial. This is our own independent experiment. Prescribing endo is Dr. Theodore Friedman from Los Angeles, CA.

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