For the last couple of years, I've been finding and posting research papers to this blog and to the various FB groups to learn and to share information that I hoped would be helpful to my son and others with his condition...
Now I am delighted to share the fruits of my labor! This online article is in its entirety.
https://academic.oup.com/jcem/article/103/2/370/4693940
The final version has been printed in the Journal of Clinical Endocrinology & Metabolism in the February, 2018 edition.
You are welcome to share the article with whomever you please. If you think you might have a comment or question that would interest others, please write it under the comments section of Hope for HO. Otherwise, I am the corresponding author and my email is listed if there are questions.
Friday, December 8, 2017
Friday, December 1, 2017
104) Actualizing more hope for HO!
Woo hoo!
After two years of slogging through endocrinology journals on oxytocin, metabolism, neurophysiology of the endocrine system, obesity, (etc.), almost a year and a half of writing in this blog on our experimental treatment of my son's hypothalamic obesity, and another four months writing and re-writing the manuscript... I'm thrilled to report that the Journal of Clinical Endocrinology and Metabolism has accepted "Oxytocin and Naltrexone successfully treat hypothalamic obesity in a boy post-craniopharyngioma resection."
The decision to conduct the experiment with oxytocin was motivated by pure desperation to escape the hellish life my son was living and would live, indefinitely, if we could not find a solution. However, the blog and desire to publish a report in a reputable medical journal has been a labor of love and one that has been propelled by the great relief we have felt after suffering for five years with HO and hyperphagia. To those of you who have followed the blog or who also live through the daily horrors of HO, you know the indignities that are associated with living with this disorder; the day we experienced the "HEFY" (half-eaten frozen yogurt, post #4) will always live in my mind as the moment I first felt hope for HO.
The experiment and case report would have not been possible had it not been for several key people who deserve special shout outs:
From the craniopharyngioma FB group- Martin H. opened my eyes to the fact that not all pituitary hormones are readily replaced in patients with PHP and Naomi C's pioneering work with oxytocin gave me the idea to try it in the first place. Dr. Theodore Friedman prescribed this difficult-to-obtain neurohormone and Dr. Jennifer Miller kindly provided her oxytocin expertise as a consultant to the experiment. While I pored through relevant PubMed papers, I contacted some of the scientists who authored the papers on oxytocin and hypothalamic obesity; some of them kindly returned my emails with helpful articles, answers to my questions, and moral support for my project. One of them was Dr. Christian Roth who took notice of our success with Sasha's weight loss and offered to have his MRI scans evaluated for hypothalamic damage and risk for hypothalamic obesity. He joined the project to help get the manuscript ready to submit for publication and asked Dr. Francisco Perez of U of Washington (neuro-radiologist) to assist with the MRI scan analysis. With the support from my co-authors (Drs. Miller, Perez, and Roth), I somehow wrote this case report and now it will be published...
I will let you all know when the advance article becomes available (posted to the JCEM website in about a week) and when the final paper is published.
Have hope for HO!
After two years of slogging through endocrinology journals on oxytocin, metabolism, neurophysiology of the endocrine system, obesity, (etc.), almost a year and a half of writing in this blog on our experimental treatment of my son's hypothalamic obesity, and another four months writing and re-writing the manuscript... I'm thrilled to report that the Journal of Clinical Endocrinology and Metabolism has accepted "Oxytocin and Naltrexone successfully treat hypothalamic obesity in a boy post-craniopharyngioma resection."
The decision to conduct the experiment with oxytocin was motivated by pure desperation to escape the hellish life my son was living and would live, indefinitely, if we could not find a solution. However, the blog and desire to publish a report in a reputable medical journal has been a labor of love and one that has been propelled by the great relief we have felt after suffering for five years with HO and hyperphagia. To those of you who have followed the blog or who also live through the daily horrors of HO, you know the indignities that are associated with living with this disorder; the day we experienced the "HEFY" (half-eaten frozen yogurt, post #4) will always live in my mind as the moment I first felt hope for HO.
The experiment and case report would have not been possible had it not been for several key people who deserve special shout outs:
From the craniopharyngioma FB group- Martin H. opened my eyes to the fact that not all pituitary hormones are readily replaced in patients with PHP and Naomi C's pioneering work with oxytocin gave me the idea to try it in the first place. Dr. Theodore Friedman prescribed this difficult-to-obtain neurohormone and Dr. Jennifer Miller kindly provided her oxytocin expertise as a consultant to the experiment. While I pored through relevant PubMed papers, I contacted some of the scientists who authored the papers on oxytocin and hypothalamic obesity; some of them kindly returned my emails with helpful articles, answers to my questions, and moral support for my project. One of them was Dr. Christian Roth who took notice of our success with Sasha's weight loss and offered to have his MRI scans evaluated for hypothalamic damage and risk for hypothalamic obesity. He joined the project to help get the manuscript ready to submit for publication and asked Dr. Francisco Perez of U of Washington (neuro-radiologist) to assist with the MRI scan analysis. With the support from my co-authors (Drs. Miller, Perez, and Roth), I somehow wrote this case report and now it will be published...
I will let you all know when the advance article becomes available (posted to the JCEM website in about a week) and when the final paper is published.
Have hope for HO!
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