Today marks three years since I started this blog. I did not know what would become of our experimental treatment with oxytocin at the time I started writing this blog but I was filled with hopes and dreams that oxytocin would treat the horrors of hypothalamic obesity and hyperphagia and help improve my son's life. To my great relief, oxytocin (and added naltrexone) has transformed my son and has changed our lives. When he started oxytocin three years ago, my son was consumed with hunger, stealing and stashing food, and living an extremely restricted life due to our food policing. In spite of our locking up all food and restricting his diet, he still had obesity, too. Thanks to oxytocin and naltrexone, he has had a normal appetite and lives with an open-access kitchen, eats healthfully (with higher complex carbohydrate allowances with the exception of restricted processed sugar), is in good metabolic health, and has a normal BMI (185 cm tall, 75 kg heavy or 6' 1" tall, 165 pounds heavy). We legitimized our treatment to the medical and research community with the publication of a case report in the Journal of Clinical Endocrinology and Metabolism in 2018 (see post #105 for link to full article) and I followed it up by publishing a Letter-to-the-Editor in the journal, Obesity (see post #120 for full article)
By sharing our discoveries with Hope for HO readers, I also wanted to let others know about this little-understood and rarely-used treatment for hypothalamic obesity and hyperphagia. Slowly but surely, more physicians have been more willing to try oxytocin for their patients with HO and hyperphagia. Please see post #118 for a list of providers I've collected and let me know if you have an oxytocin prescriber who is not listed and willing to be listed.
Our story does not end with the our successful experiment for HO and hyperphagia. The vast majority of survivors of craniopharyngioma continue to suffer from HO and hyperphagia and related problems. Most doctors still do not know enough about oxytocin to be willing to prescribe it. Even those lucky enough to find a doctor to prescribe oxytocin, the treatment is still experimental and patients (like my son) have to act as Guinea pigs to experiment on themselves in order to find the right dose.
There is still a great deal to be learned about successfully treating HO and hyperphagia. I have recently learned of another DIY mother to a boy with hypothalamic obesity who has discovered an amazing treatment for his HO and hyperphagia by using an antihistaimine and flavonoid which has helped her son in astounding ways. I will be interviewing her and posting the interview to this blog, stay tuned...!
Besides HO/hyperphagia, there are other untreated symptoms endured by survivors of pituitary and hypothalamic brain tumors. I have learned through the years of watching my son and reading about accounts from others that social impairment (autistic-like, usually a lack of social motivation for peer friendships), obsessive and compulsive behaviors, mood and anxiety struggles, and stereotypic repetitive behaviors (skin picking) are commonly experienced, yet poorly understood and (even more so) inadequately treated. These psychosocial symptoms, though not life-threatening, are hugely impactful on the quality of life for brain tumor survivors. I am determined to find ways to better address these un(der)-treated symptoms and hope to help organize a network of providers and researchers for this cause.
In the meantime, help me celebrate three years of Hope for HO by sharing your experiences (if you have them) about oxytocin with your comments in the blog, in your Facebook group, or with me personally on private messenger... and let's keep spreading the hope!
As an adult friend who spends time with Sasha several times a week, I can testify to an amazing and ongoing transformation as he has begun experiencing himself as "able" rather then "disabled".
ReplyDeleteMuch credit goes to you, dearest Marla! Thank you, as always, for your loving support and friendship!
DeleteCan you explain the relationship of repetitive behaviors like skin picking to hypothalamic/pituitary damage from brain tumors? My child is really struggling with this behavior, and I never thought to link it to her damaged pit/hypo.
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