On March 16, 2019, Children’s Hospital of Philadelphia held a one-day conference for families affected by pediatric pituitary brain tumors. This inaugural conference was a great success and gathered people in attendance from all over the United States to learn about the effects of tumors affecting the hypothalamic pituitary adrenal (HPA) axis. Many more would have come were it not for the distance. Although video streaming was not available the day of the conference, the speakers have made their presentations available.
Here they are:
https://www.chop.edu/centers-programs/neuroendocrine-center/resources-for-professionals
I learned that due to the success and the obvious need for such a conference, CHOP will be organizing a conference next year as well, date TBD, likely in March or April of 2020. Besides the info gathered at the conference, it was additionally wonderful and invaluable to get to meet other families who have been affected by these brain tumors. For me, it was great to put a face to a name since it was an opportunity to meet people with whom I had interacted previously through social media only. I hope that more people will be able to attend next year!
Quick update on Sasha: he is doing well. For the past 2.5 years, Sasha's homeostatic hunger has definitely been successfully treated by oxytocin/naltrexone. The evidence is shown by his ability to live with a fully open kitchen, not distracted by his hunger, not constantly obsessed with food, while able to eat moderately and at appropriate times. His weight also remains stable in a healthy normal range of (BMI= 22.4). However, hedonic hunger is a different matter. For those who don't know what I mean by "homeostatic" versus "hedonic" hunger: homeostatic hunger is the drive to eat due to true hunger. You know when you have homeostatic hunger because your stomach growls, you feel hungry, and you are apt to eat what foods are available to you. Hedonic hunger is that feeling of wanting to eat for pleasure, even if you aren't hungry, (for example, having an appetite for dessert even after a large meal).
One could argue that hedonic appetite may be partly responsible for the world's obesity epidemic. For Sasha (and probably for many), eating processed sugar exacerbates his hedonic hunger, causing cravings for more sugar and creating a vicious cycle of addiction. Like alcohol, sugar is legal and omnipresent in our society. Some people are able to responsibly and reasonably handle a moderate consumption of alcohol; those who cannot are deemed alcoholics. In a parallel fashion, some people can handle a moderate consumption of sweets while others cannot. I think that Sasha is understanding that he may be the type of person who is unable to consume sugar without it causing him to feel like an addict (thereby creating a terrible cycle of craving and seeking, with adverse consequences). We have suspected this sugar addiction for a long time but it was not up to us to convince him (mainly because he didn't wish to accept it).
As he grows more mature, he appears to appreciate the (aggravating) role that sugar plays in his life. Recently, Sasha demonstrated his maturity and insight by a decision he made to skip an (Easter) holiday dinner with family friends because he knew that it would be too triggering for him (due to Easter egg hunts, lots of desserts, etc.). He volunteered to make other plans with another family friend and he told us that he was very glad he did. Although it was a little sad to have him not join the rest of the family at this dinner, it was a decision he made for the sake of his physical and emotional health. I am proud of his smart choice and hope that he will continue to act with wisdom.
