Hi Everyone!
I can't believe that I started this blog on July 2- only two weeks ago! You all have provided me with such inspiration to share about all that we've experienced with oxytocin in our journey with this horrible brain tumor and its insidious aftermath. Thank you for following and for being so supportive and kind in your encouragement of my writing this blog. I do hope that it is helping others by providing hope for these awful conditions we or our loved ones suffer.
Perhaps I should mention here that I can see where the readers are located and that the blog is being read by an international group of people (YOU!) I am so honored that people from all over the world are taking an interest in this topic and in our story. Hello Albania! Hello South Africa! Hello South Korea, Israel, Spain, Poland, Australia, Canada, Ireland...! There are many more countries that I am not listing here... so hello everyone! I even had to look one up which turned out to be a tiny island off the coast of Madagascar! Bonjour Réunion!
I have also sent the blog to academic obesity researchers who write and publish papers on hypothalamic obesity. It has definitely piqued their interest so I am hopeful that spreading the word on oxytocin will inspire more research into this amazing hormone replacement. If you haven't done so already, I recommend that you also tell your doctors about our experience so that they may also be enlightened about oxytocin. I am not saying that it is a wonder drug for everyone but the research is definitely only emerging on its use for hypothalamic obesity. I know only that people with Prader-Willi Syndrome have experienced such dramatic effects but don't know if others with non-PWS Hypothalamic Obesity have experienced the effects we have seen in these last few weeks.
Speaking of oxytocin research with PWS, here is an update about upcoming phase 2 dosing studies. See here for the good news: http://www.pwsausa.org/update-oxytocin-phase-2-trial/.
Tonight I had the chance to finally talk on the phone with Dr. Friedman, Sasha's oxytocin prescriber. Even he was surprised to hear about Sasha's dramatic changes on oxytocin. Apparently, Sasha is his only patient with hypothalamic obesity and one of his only pediatric patients. I expressed my deep gratitude that he gave us a chance to try oxytocin and he complimented me on my hard work and research. He used the word "miracle" to describe what I was reporting to him about Sasha. Indeed, it does feel like a miracle. But what is amazing is that if these dramatic changes can happen with us, it can someday happen to you.
Believe it.
But don't stop there... advocate for yourselves and your loved ones. Don't be afraid to be push the medical establishment. As I mentioned in my blog post #10, this was all started by my involvement with social media and individuals in the various Facebook Groups to which I belong (a shout out to some of the moms on the PWS group who encouraged me to contact PWS/obesity researcher Dr. Jennifer Miller and a special shout out to Jen B. of the PWS group who shared a webinar by Dr. Miller that gave me the clue on correct dosing).
Let's keep crowdsourcing for a cure!
As one of my favorite cranio survivor says (you know who you are!)... WOO HOO!
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