122) Sasha update & oxytocin questions to ask at the CHOP conference

Quick update since I haven't posted anything about Sasha in Hope for HO for several months.  In my last post about him (October 24, 2018), he was getting used to having his own spending money and having his ups and downs with buying sweets and with weight fluctuations...

Sasha is still learning his lessons and feeling humbled re: sugar.  Over the holidays, he overindulged in sugary desserts which got him a bit hooked.  From Thanksgiving (late November) to Valentine's Day (mid February), he was buying cookies and muffins at the school cafeteria on a regular basis and eating sweets at all the parties that abound during the holidays. During these few months, he gained about 2 kilos (4-5 pounds).  He has since realized that he is weak and unable to eat sweets on a regular basis without feeling hooked by them; he is now abstaining from regularly indulging in cookies, muffins, etc. In the short 2+ weeks he has not been eating sweets from the school cafeteria, he has lost 3 kilos.  At 76 kilos (167 lbs), now he weighs less at 185 cm (6'1") tall than he did when he started the oxytocin experiment 2.5 years ago when he was only 170 cm (5'7")  tall.

For Sasha, the weight loss is a side effect from laying off the sugar because it is the experience of being unhooked by the power of sugar cravings that is the primary effect and the ultimate reward for him. Interestingly, he does not seem to get this addiction feeling and behavior when he eats complex carbs.  He eats a moderate amount of pasta, starchy vegetables (potatoes), beans, fresh fruit, whole grains, etc. with little impact on his weight or cravings. It's the REFINED SUGAR that is the culprit for him. For his own sake, I hope that he can continue to make his own good choices about how he wants to live his life.  I expect that he will "relapse" again in the future by getting into cycles of eating sweets but I hope that he can figure it out and regain his footing when that happens with more life experience and emotional maturity. For 6 years following his brain surgery and before trying oxytocin, I was the Kitchen Bitch, commander in chief of the Food Police, and enforced control where he could not. With the help of oxytocin, I've been able to retire from being KB; he's gained his freedom, his improved health with normal BMI and normal appetite. As much as I'd like to help, it's really up to Sasha to figure out how to resist the temptations of sugar by making good choices for himself.

Switching gears...

The inaugural Parent Pituitary Conference at the Children's Hospital in Philadelphia (CHOP) is happening in less than two weeks on March 16, 2019! Our craniopharyngioma group has been wishing for this conference for so very long and it is so wonderful it is actually going to happen!  Thanks again to Amy Wood of the Wood Foundation for spearheading this effort and coordinating with the conference director (Craig Alter, MD) to make it happen!

Among the presenters, Shana McCormack, the PI of the oxytocin and HO study, will be presenting on oxytocin and HO and I am very curious about what she will share.  Because I believe her study is still ongoing (and that she may even still be recruiting subjects?), she may not be at liberty to say much about her findings thus far.  Nevertheless, I have some questions to ask:

1. Is there a clinically meaningful way to measure oxytocin levels in those with suspected or demonstrated hypothalamic damage and respective clinical markers (HO, hyperphagia, social impairment, etc.)?  Since oxytocin is not typically replaced, what biomarkers might indicate that oxytocin might be a beneficial therapeutic agent?

A recent study https://www.ncbi.nlm.nih.gov/pubmed/30656597 showed that plasma oxytocin levels were higher in those with hypopituitarism (compared to normal controls) and highest in hypopituitary patients with diabetes insipidus compared to normal controls. Why? This ironic finding also begs the question: should plasma oxytocin levels be used as a way to determine whether oxytocin is indicated for treatment in patients with hypopituitarism and even in patients with posterior pituitary damage? What is the most meaningful and accurate way to measure oxytocin levels in a patient? How do the various tests (blood, saliva, urine) compare in measuring oxytocin levels?

2.  How does oxytocin replacement differentially affect these patient populations:

• Those with demonstrated damage to paraventricular nucleus and supraoptic nucleus (areas of the hypothalamus that produce oxytocin) versus those who do NOT have demonstrated damage to PVN and SON?
• Those with rapid weight gain and obesity but who do NOT have excessive appetite (hyperphagia) versus those with rapid weight gain and hyperphagia?
• Those with BMI over 25, over 30, over 35, etc.
• Male versus female patients

3. Is there a formula for optimal oxytocin dosing or is it based solely on individual response? 

4. Does chronic dosing cause tachyphylaxis (receptor burnout) and if so, what is the best way to prevent it?

5.  Are there common side effects found in patients trialling oxytocin and at what doses do these side effects present?

6. How does oxytocin interact with the other hormones (sex, corticosteroids, T4, T3, ADH, GH)? How common is it for patients with diabetes insipidus to need to decrease or cease their desmopressin Rx due to being on oxytocin?

7.  What will it take (how many studies, what type of evidence, how many years) for the FDA to approve oxytocin as a therapeutic agent to be used to treat panhypopitutiarism and/or hypothalamic obesity?

I know some of my questions may not have clear answers yet. I imagine some of you (especially those who would like to but cannot attend the conference) may have your own questions.  If so, feel free to post them here under comments in this blog so that everyone reading may see your questions (since I post this blog on multiple FB groups).  If it looks like something she might be able to answer, I will do my best to also pose the question to Dr. McCormack.

To those who are planning to attend the conference in Philly on March 16, I look forward to meeting you then!