1) Welcome and Introduction to the Blog

Welcome to Hope for HO!

Hope for HO is a blog about our experience with Hypothalamic Obesity (HO) and how the use of Oxytocin has provided us with a potential hope for a cure. Allow me to share some background information and the purpose of this blog.  In order to protect my son's privacy, I am calling him "Sasha" (not his real name).

I am the mother to a boy, 13, who was diagnosed in 2011 with a giant craniopharyngioma when he was 8 years old.  This 5 cm brain tumor was situated on and around his pituitary gland, hypothalamus, and optic nerve. He had a full resection and a 6 week stay in the PICU.  After he returned home from his long hospital stay, he accidentally slipped and fell, hitting his fragile head on a table. One month later, he was discovered to have had a subdural hematoma and had to have emergency surgery to drain the brain bleed.  He had another week stay in the hospital following his second brain surgery. He survived the tumor and surgeries, had a very long and arduous rehabilitation, but was left with many chronic conditions including panhypopitutiarism (complete lack of hormone function due to destruction of his pituitary gland), hypothalamic dysregulation, and vision impairment.

Post-resection, Sasha has suffered from multiple, complex conditions.  He takes 9 different medications per day, three times a day.  These medications are mostly hormone replacements to compensate for his complete lack of hormone functioning.  For example, he has Diabetes Insipidus, a medical condition that causes him the inability to produce the anti-diuretic hormone, Arginine Vasopressin.  Without this hormone, he is unable to retain water in the body and to constrict blood vessels.  To make matters worse, his tumor and surgery resulted in his losing his ability to feel thirst.  In order to keep Sasha hydrated and his electrolytes in balance,  he has to take synthetic vasopressin (DDAVP) pills (3 times a day, 19 pills in total), keep track of his "ins and outs" by drinking a measured amount of water and tracking of his urine output so that it is not in excess of what is permitted, and getting weekly blood draws to measure his sodium levels.  This has proven to be a very arduous process and getting him to drink the necessary amount of water when he feels no thirst is no small feat.

He also suffers from a life threatening condition called Adrenal Insufficiency which requires that he take a maintenance dose of corticosteroids, or stress steroids.  When Sasha falls ill or is fighting an infection, he needs to take a higher dose to help his body deal with the extra stress of the illness.  Without the "stress dose" of this medication, Sasha is at risk of going an adrenal crisis which means shock, coma and death.  In spite of our awareness of this condition, he has had some close calls after having had a couple of serious adrenal crises in the nearly 5 years post-resection.  We are lucky, indeed, to still have him with us after these brushes with death.

These are but two of the many very serious and high maintenance medical conditions suffered by Sasha that he lives with every day of his life since brain surgery.  I am sharing just two of these conditions to give you a glimpse into a little of what he deals with in his life. Despite the high maintenance and life threatening nature of his many serious medical conditions, none of them have been as stressful, as life limiting, or as psychologically damaging as the one we call Hypothalamic Obesity (HO).  I have often thought that if I was granted just one wish in the whole world for my son's health, I would wish to banish HO from our lives forever while gladly keeping all the rest of his medical conditions, with gratitude.

I will describe HO in another posting if you are not aware of this metabolic condition.  For now, it suffices to say that I was sure that HO would ruin my son's life forever.  Despite his being an intelligent and capable person (both before and after surgery), HO would keep him a prisoner in his own body.  HO would mean that we would have to live forever with locks on the fridge and kitchen cabinets to keep him from eating without discretion.  HO would force him to never be left out of sight by an adult guardian for fear he would seek food and not be able to control the amount he would eat.  HO would prohibit him from ever having a normal social life- no dates, no parties.  HO would mean that we would have to be on guard in every store, keeping an unblinking watchful eye on him for fear he would shoplift food. HO would mean that he would never be able to be trusted in anyone else's home, for fear he would eat their food or steal their money to buy food.  HO would destroy our relationship with him because we could never trust him to tell the truth when it came down to issues relating to food and eating.  HO would prevent him from fulfilling his educational goals of going away to college or supporting himself by holding down a job. In other words, HO would force us to treat him like a young child forever and ruin his chances of ever living as an independent adult.

Ever year that passed, Sasha grew a year older; a year more sophisticated in his abilities to sneak and steal food, a year closer to graduating from high school and losing the 1:1 aide that he was provided during the school day to help keep him safe from food, a year closer to feeling the humiliation of having to be constantly supervised by an adult while his teenaged-peers enjoyed the growing freedom entitled to normal teens... and I felt an increasing intense and frantic desperation to find a treatment for his HO.

To my dismay, I learned that some of the hormones my son's panhypopituitary brain stopped producing were NOT being replaced because they were either a) not understood or b) not considered "life saving" or c) both. I learned that one of these hormones was oxytocin.  Another mom, Naomi Cook, was using it experimentally with her cranio daughter and I closely followed her story.  She bravely navigated unchartered territory with oxytocin and very recently published a case study (the first of its kind!) on its use for her panhypopituitary daughter. Naomi found that oxytocin helped increase her daughter's social motivation and desires for bonding and decreased her daughter's compulsive behaviors.  I also learned that there was burgeoning research using oxytocin in Prader-Willi Syndrome as a potential treatment for the incessant hunger and anxiety symptoms experienced by its sufferers.  I read as much medical literature as I could, I communicated as much as I could with people in the PWS, Craniopharyngioma, HO and Oxytocin Facebook groups, I even sought to communicate directly with some researchers of oxytocin, and I was encouraged by what I learned- I badly wanted to get some to try it on Sasha!  Unfortunately, due to the fact that oxytocin is not a typically replaced hormone for people with panhypopituitarism, finding a doctor to prescribe oxytocin is almost impossible.  However, thanks to a great deal of social-media networking, I was able to find a progressive endocrinologist in Los Angeles (Theodore Friedman) who was willing to write a script for oxytocin.

After a few weeks on oxytocin and experimenting with different doses, we began to notice a significant change with Sasha and his relationship to food.  We noticed his decreased appetite, his decreased preoccupation with food, and that he was no longer having "meltdowns" related to food and hunger.  Seeing the improvements was a miracle, a dream come true, and it filled me with indescribable joy and hope for my son and others who suffer from HO!

This blog is a documentation of Sasha's journey with HO and the hope for a cure that is what we call "the Oxytocin Experiment."  We do not know the long term effects of oxytocin but I am full of hope that it holds the promise of potentially curing some of the disabling symptoms of HO and other associated problems of (what appears to be) oxytocin deficiency.   It is my hope that this blog may inspire hope for the sufferers of HO and their caregivers and will provide helpful information to their treating medical professionals who are interested in learning from the personal testimony of one boy's experience with oxytocin replacement.