We have come a long way since the daily battles between the Kitchen Bitch and the HO Monster. I surely do not miss those days. Yet when I read about other people‘s battles, I am painfully reminded that the war against HO is far from over. I know that our case study had an “n” of only one, but I still hope to facilitate the process of helping others combat this rare obesity condition in all ways I can.
Here is a letter to the editor that I wrote to the journal, Obesity. I hope that it will help to educate and influence the attitude of prescribing physicians so that more HO sufferers can get the help they need. Since the publisher (Wiley) has some copyright restrictions on my sharing the final published article with social media and on blogs, I am sharing my pre-published and accepted manuscript; very little has been changed (only minor style edits) from the pre-published manuscript to the finalized version, link to Researchgate full article here: https://www.researchgate.net/profile/Eugenie_Hsu/publication/329187211/inline/jsViewer/5c03ea25a6fdcc1b8d502cd8
Hypothalamic Obesity Treatment Demands Thinking Outside the Box
Editor:
It was no surprise to read about the disappointing treatment outcomes in Rose et al.’s study describing the self-report data from the International Registry of Hypothalamic Obesity Disorders (1). The poor outcomes and the lack of effective treatment options informed by randomized controlled trials (RCTs) (2) make the clinical management of hypothalamic obesity (HO) very challenging indeed. Besides the severe cardiometabolic morbidities associated with HO (3), HO is also greatly responsible for the poor quality of life among its sufferers (4). As a mother to a boy with craniopharyngioma (CP)-HO and hyperphagia, I don’t need to read the medical literature to know about the torment of living with CP-HO.
My post-operative CP son was consumed with hunger and would stop at nothing to find food. His poor satiety was evidenced by his constant complaints of hunger and persistent efforts to steal and stash food. Without effective treatment for his severe hyperphagia and concurrent obesity, we resorted to enforcing lifestyle restrictions common to families with a child with Prader-Willi syndrome (PWS). Five years into intense dietary restrictions, food policing and lockdown, my son remained obese and I knew our restrictive lifestyle was unsustainable. Feeling frantic for a solution, I joined CP and PWS parent support groups and scoured the medical literature. Despite his having panhypopituitarism, I learned that not all of his hormones were being replaced, notably oxytocin. When I read that some of oxytocin’s functions matched my son’s untreated symptoms, I was determined to have him try it.
In 2016, my son began an experimental trial of intranasal oxytocin and ten weeks into the experiment, naltrexone was added.The successful 48-week experiment was published as a case report (5). After more than two years, my son has maintained his positive treatment outcomes: his current BMI is 22.8 and his appetite is normal. We have ceased our former food-restricted lifestyle. He has no adverse effects to oxytocin just as he has no adverse effects to his other replacement hormones.
Despite my son’s successful treatment outcome, our published case report, numerous pre-clinical studies on oxytocin’s effect on energy balance and weight loss (6), promising results from nascent clinical studies (7), the dearth of effective treatment, and the poor quality of life of HO sufferers, HO patients’ requests to their physicians for oxytocin are typically denied. Why? According to these patients’ physicians, oxytocin is “useful for lactation and labor induction only” or that “sufficient research is lacking” to justify a prescription for oxytocin.
A clinical trial testing oxytocin for CP-HO is now underway (NCT02849743). Yet while we impatiently await RCT-endorsed efficacious treatment for this rare condition, patients continue to suffer. As a mother who has seen her son transformed by a more novel approach, I hope that more HO patients are able to access atypical and promising treatments, such as oxytocin. Until HO sufferers can rely upon a gold standard intervention, I assert that successfully treating HO demands thinking outside-the-box with cutting edge approaches; indeed, I am glad that I did.
REFERENCES
1. Rose SR, Horne VE, Bingham N, Jenkins T, Black J, Inge T.Hypothalamic Obesity: 4 Years of the International Registry of Hypothalamic Obesity Disorders. Obesity 2018;0(0). doi:10.1002/oby.22315.
2. Ni W, Shi X. Interventions for the Treatment of Craniopharyngioma-Related Hypothalamic Obesity: A Systematic Review. World Neurosurg. 2018. doi:10.1016/j.wneu.2018.06.121.
3. Wang KW, Chau R, Fleming A, Banfield L, Singh SK, Johnston DL, Zelcer SM, Rassekh SR, Burrow S, Valencia M, de Souza RJ, Thabane L, Samaan MC. The effectiveness of interventions to treat hypothalamic obesity in survivors of childhood brain tumours: a systematic review. Obes. Rev. 2017. doi:10.1111/obr.12534.
4. Mortini P. Craniopharyngiomas: a life-changing tumor. Endocrine 2017. doi:10.1007/s12020-016-1192-2.
5. Hsu EA, Miller JL, Perez FA, Roth CL. Oxytocin and naltrexone successfully treat hypothalamic obesity in a boy post-craniopharyngioma resection. J. Clin. Endocrinol. Metab.2018;103(2). doi:10.1210/jc.2017-02080.
6. Skinner JA, Garg ML, Dayas C V., Fenton S, Burrows TL.Relationship between dietary intake and behaviors with oxytocin: A systematic review of studies in adults. Nutr. Rev. 2018. doi:10.1093/nutrit/nux078.
7. Olszewski PK, Klockars A, Levine AS. Oxytocin and potential benefits for obesity treatment. Curr. Opin. Endocrinol. Diabetes Obes. 2017. doi:10.1097/MED.0000000000000351.
If you want to see the article in its online form, you may click on this link but you will need to be a subscriber to the journal to see the article in its entirety. https://onlinelibrary.wiley.com/doi/pdf/10.1002/oby.22371
As I have mentioned before, I do not ask for any compensation or any special thanks for my writing or advocacy. However, if you care to support a wonderful not-for-profit organization that helps improve the quality of life for pediatric brain tumor survivors, please donate to the Raymond A. Wood Foundation, thank you! https://www.rawoodfoundation.org/donate/
Monday, November 26, 2018
Wednesday, November 21, 2018
119) Thanksgiving gratitude... Special shout out to Marci Lerman Serota and Amy Wood!
On this Thanksgiving Eve, I am grateful for the rain...I am grateful for the fresh air that has arrived with the rain...and I am grateful that I have a roof over my head to protect me from the rain. As a resident of the San Francisco Bay Area only 150 miles south of the devastating fire of Paradise, California, I am so glad that the rain has finally come and hope that it helps extinguish the horrific fire that has killed over 80 people, left over 1000 people still missing, and left thousands of people homeless. Whether a tragedy is far away or close to home, these terrible life events put things into perspective and can help us feel even more grateful for what we have.
I would also like to express my gratitude to all of you, whom I consider my fellow health advocates. It was from “cranio mum” Naomi Cook and PWS moms that I learned about oxytocin’s treatment potential for my son’s HO. Thanks to the opportunity to use social media, I have been able to spread the word about the successful experiment and I believe that our continued advocacy will help make it possible to advance scientific research and medical treatment to improve the lives of sufferers with HO.
As a parent to a child with life threatening and chronic health problems, I know that we, parents and caregivers, are on the lookout for how to optimize the health of our loved ones and that we are all advocates, all of the time. There are some extra special parent advocates, however, and I would like to take this opportunity to give a special shout out to two in particular who are very active in the hypothalamic obesity and pediatric brain tumor world:
I've written before about Marci Lerman Serota in my blog post #115. Well, her book has come out and is ready for purchase at www.cranionutrition.com. Marci is a registered dietician nutritionist and a mother to a boy who was diagnosed with craniopharyngioma (same brain tumor as Sasha's) at age 3 and who developed HO in its aftermath. Marci is a fierce parent advocate who has found a way to treat her son's life threatening HO with her savvy nutrition plan. Yay, Marci! Thank you for all that you do for the HO community and for your hard work in writing and publishing your book. I hope that readers can see that there is hope for HO through what you have shared in your website and book.
Amy Wood is the Executive Director of the Raymond A. Wood Foundation, a non-profit organization benefiting survivors of pediatric brain tumors and their families. Amy is the mother of a boy who also had a craniopharyngioma. In the aftermath of the tumor, Amy's son (like Sasha) suffered panhypopituitarism including adipsic diabetes insipidus (anti-diuretic hormone deficiency with absent thirst). Without a working thirst mechanism, Amy's son had difficulty keeping his sodium within normal limits and needed frequent laboratory visits to check his serum sodium levels in order prevent the danger of having unbalanced electrolytes. Although medically necessary, going to the lab multiple times a week is a huge hassle. The i-STAT, a blood analyzer device that can be used at home, is super convenient but is also totally cost prohibitive ($15,000) and not easy to obtain. Well, after Amy (and her husband, Shawn) started the foundation, they have been helping to raise money so that i-STAT devices can be gifted to eligible brain tumor survivors with adipsic DI. What a life-changing gift! Please see the foundation's website to learn more about this amazing organization! https://www.rawoodfoundation.org/
Additionally, Amy has also been the lead parent organizer of the Pituitary Tumor Parent Conference that will take place at the Children's Hospital of Philadelphia (CHOP) on March 16, 2019. We have discussed in our cranio FB community about having a conference and she has worked hard on making this dream come true! Registration and more details will become available on December 1, 2018 so stay tuned! The Raymond A. Wood Foundation will be one of the conference sponsors and will help make the conference very affordable ($20 for adults, free for kids). I applaud you, Amy. Thank you so much for all that you do so that we can all benefit from the education and collaborative sharing that we will look forward to at this inaugural conference.
As you can probably imagine, all of these parent-powered projects take time and effort. Besides the advocacy work, Amy, Marci and I still have to parent our special needs kids, work at our other jobs/responsibilities, etc. Speaking for myself, I do not ask for any financial compensation for my research, advocacy or blog writing and sharing. It is a labor of love and I am motivated by my desire to see others find the relief that we have found. Many of my blog readers have expressed their appreciation to me for the information, research literature, advocacy, etc. on oxytocin and HO and learning that I have helped someone is truly my reward; however, if I could ask for something, it would be this:
On Giving Tuesday (November 27), please donate whatever you can to the Raymond A. Wood Foundation. The foundation is a small one and depends on donations. Amy is an unpaid executive director and her hard work benefits all of us who have a child who suffers from the effects of a brain tumor. If you feel that you have benefited from what you've learned in this blog or that you may benefit from the information that will be shared at the CHOP conference (psst... Marci will be a featured speaker), or if you just want to do something nice for me, please show your gratitude through a donation. I know there are many great organizations with donation-worthy causes, but I ask that you please consider giving to the Wood Foundation. I will post a link to my blog on Giving Tuesday via Facebook so that you may donate. Thank you kindly!
May we all feel gratitude for our blessings! To my American readers, Happy Thanksgiving!
I would also like to express my gratitude to all of you, whom I consider my fellow health advocates. It was from “cranio mum” Naomi Cook and PWS moms that I learned about oxytocin’s treatment potential for my son’s HO. Thanks to the opportunity to use social media, I have been able to spread the word about the successful experiment and I believe that our continued advocacy will help make it possible to advance scientific research and medical treatment to improve the lives of sufferers with HO.
As a parent to a child with life threatening and chronic health problems, I know that we, parents and caregivers, are on the lookout for how to optimize the health of our loved ones and that we are all advocates, all of the time. There are some extra special parent advocates, however, and I would like to take this opportunity to give a special shout out to two in particular who are very active in the hypothalamic obesity and pediatric brain tumor world:
I've written before about Marci Lerman Serota in my blog post #115. Well, her book has come out and is ready for purchase at www.cranionutrition.com. Marci is a registered dietician nutritionist and a mother to a boy who was diagnosed with craniopharyngioma (same brain tumor as Sasha's) at age 3 and who developed HO in its aftermath. Marci is a fierce parent advocate who has found a way to treat her son's life threatening HO with her savvy nutrition plan. Yay, Marci! Thank you for all that you do for the HO community and for your hard work in writing and publishing your book. I hope that readers can see that there is hope for HO through what you have shared in your website and book.
Amy Wood is the Executive Director of the Raymond A. Wood Foundation, a non-profit organization benefiting survivors of pediatric brain tumors and their families. Amy is the mother of a boy who also had a craniopharyngioma. In the aftermath of the tumor, Amy's son (like Sasha) suffered panhypopituitarism including adipsic diabetes insipidus (anti-diuretic hormone deficiency with absent thirst). Without a working thirst mechanism, Amy's son had difficulty keeping his sodium within normal limits and needed frequent laboratory visits to check his serum sodium levels in order prevent the danger of having unbalanced electrolytes. Although medically necessary, going to the lab multiple times a week is a huge hassle. The i-STAT, a blood analyzer device that can be used at home, is super convenient but is also totally cost prohibitive ($15,000) and not easy to obtain. Well, after Amy (and her husband, Shawn) started the foundation, they have been helping to raise money so that i-STAT devices can be gifted to eligible brain tumor survivors with adipsic DI. What a life-changing gift! Please see the foundation's website to learn more about this amazing organization! https://www.rawoodfoundation.org/
Additionally, Amy has also been the lead parent organizer of the Pituitary Tumor Parent Conference that will take place at the Children's Hospital of Philadelphia (CHOP) on March 16, 2019. We have discussed in our cranio FB community about having a conference and she has worked hard on making this dream come true! Registration and more details will become available on December 1, 2018 so stay tuned! The Raymond A. Wood Foundation will be one of the conference sponsors and will help make the conference very affordable ($20 for adults, free for kids). I applaud you, Amy. Thank you so much for all that you do so that we can all benefit from the education and collaborative sharing that we will look forward to at this inaugural conference.
As you can probably imagine, all of these parent-powered projects take time and effort. Besides the advocacy work, Amy, Marci and I still have to parent our special needs kids, work at our other jobs/responsibilities, etc. Speaking for myself, I do not ask for any financial compensation for my research, advocacy or blog writing and sharing. It is a labor of love and I am motivated by my desire to see others find the relief that we have found. Many of my blog readers have expressed their appreciation to me for the information, research literature, advocacy, etc. on oxytocin and HO and learning that I have helped someone is truly my reward; however, if I could ask for something, it would be this:
On Giving Tuesday (November 27), please donate whatever you can to the Raymond A. Wood Foundation. The foundation is a small one and depends on donations. Amy is an unpaid executive director and her hard work benefits all of us who have a child who suffers from the effects of a brain tumor. If you feel that you have benefited from what you've learned in this blog or that you may benefit from the information that will be shared at the CHOP conference (psst... Marci will be a featured speaker), or if you just want to do something nice for me, please show your gratitude through a donation. I know there are many great organizations with donation-worthy causes, but I ask that you please consider giving to the Wood Foundation. I will post a link to my blog on Giving Tuesday via Facebook so that you may donate. Thank you kindly!
May we all feel gratitude for our blessings! To my American readers, Happy Thanksgiving!
Sunday, November 11, 2018
118) Providers willing to prescribe oxytocin: name, speciality, location
I have written a Letter to the Editor to (the journal) Obesity and it was accepted for publication (link): https://www.researchgate.net/publication/329187211_Hypothalamic_Obesity_Treatment_Demands_Thinking_Outside_the_Box. I wrote about the need to "think outside-the-box" when it comes to treating hypothalamic obesity. I am hopeful that it will change the minds of some providers to become more willing to prescribe an off-label intervention like oxytocin to their HO patients. Please keep in mind that oxytocin for HO is considered "experimental" because dosing trials have not been done yet and it does not have FDA approval. One could say that the providers who prescribe oxytocin for HO are practicing "out-of-the-box."
Since I have started this blog and published our case report, I have been learning of a few more providers who are willing to prescribe. It is still very much a tiny minority of endocrinologists who appear to be willing to use oxytocin in this off-label manner, but it is a start! Like my updated list of research papers in post #8, I will update this list as I learn about more prescribing providers.
If you know a physician who is willing to prescribe oxytocin, please share her/his name, speciality, whether s/he treats children or adults, and location and I will add them to this list. Please note that I am not including them on this list as an endorsement; I am merely sharing them as providers who have been willing to prescribe oxytocin to their patients. Additionally, it goes without saying (but I will say it anyway as a caveat) that physicians will use their own clinical discretion on a case-by-case basis as to how they decide to treat their patients and just because they are listed here as providers who have prescribed oxytocin to a patient, does not mean that they will necessarily prescribe it to other patients.
Here's what I have so far:
USA
1. Dr. Theodore Friedman; adult endocrinology, Los Angeles, CA
2. Dr. Lewis Blevins; adult endocrinology, San Francisco, CA
3. Dr. Kurt Midyett; pedi and adult endocrinology, Overland, KS
4. Dr. Emily Gutierrez; pedi and adult functional and integrative medicine, Austin TX
5. Dr. Scott Moreland; pedi and adult psychiatry, Sugarland, TX
6. Dr. Justin Saya, Defy Medical Group Practice; adult endocrinology, Tampa, FL
7. Dr. Jennifer Miller; pedi endocrinology, Gainesville, FL
8. Dr. Nelly Mauras; pedi endocrinology, Jacksonville, FL
9. Dr. Brian Childers; pedi general practice, Douglas, GA
10. Dr. Timothy Petersen; adult endocrinology, Virginia Beach, VA
11. Dr. Rebecca Ryder; adult gynecology, Chesapeake, VA
12. Dr. Jose Alvarado; pedi general practice, Salisbury, MD
13. Dr. Andrew Scrogin; adult endocrinology, Auburn Hills, MI
14. Dr. Jennifer Abuzzahab, pedi endocrinology, St. Paul, MN
15. Dr. Tayma Shayna, pedi and adult primary care, Sugarland, TX
16. Dr. Charles Upchurch, adult endocrinology, Charlotte, NC
17. Dr. Christian Roth, pedi endocrinology, Seattle, WA
18. Dr. Kathryn Weaver, adolescents and adults, endocrinology, Seattle, WA
19. Dr Bethany Peterson, adult gynecology, Katy, TX
Australia
1. Dr. John Hart; adult functional and integrative medicine, Sydney, NSW
2. Dr. Rory Clifton-Bligh; adult endocrinology, Sydney, NSW
3. Dr. David Torpy; adult endocrinology, Adelaide, SA
4. Dr. Andrew Oliver; adult general practice, Lake Cathie, NSW
5. Dr Nick Davies; adult general practice, Gorokan, NSW
Canada
1. Dr. Jill Hamilton, pedi endocrinology, Toronto, ON
2. Dr. Alexander Chesover, pedi endocrinology, Toronto, ON
3. Dr. Munish Khosla; adult endocrinology, Calgary, AB
New Zealand
1. Dr. Helen Smith; pedi and adult holistic practice, Auckland
Since I have started this blog and published our case report, I have been learning of a few more providers who are willing to prescribe. It is still very much a tiny minority of endocrinologists who appear to be willing to use oxytocin in this off-label manner, but it is a start! Like my updated list of research papers in post #8, I will update this list as I learn about more prescribing providers.
If you know a physician who is willing to prescribe oxytocin, please share her/his name, speciality, whether s/he treats children or adults, and location and I will add them to this list. Please note that I am not including them on this list as an endorsement; I am merely sharing them as providers who have been willing to prescribe oxytocin to their patients. Additionally, it goes without saying (but I will say it anyway as a caveat) that physicians will use their own clinical discretion on a case-by-case basis as to how they decide to treat their patients and just because they are listed here as providers who have prescribed oxytocin to a patient, does not mean that they will necessarily prescribe it to other patients.
Here's what I have so far:
USA
1. Dr. Theodore Friedman; adult endocrinology, Los Angeles, CA
2. Dr. Lewis Blevins; adult endocrinology, San Francisco, CA
3. Dr. Kurt Midyett; pedi and adult endocrinology, Overland, KS
4. Dr. Emily Gutierrez; pedi and adult functional and integrative medicine, Austin TX
5. Dr. Scott Moreland; pedi and adult psychiatry, Sugarland, TX
6. Dr. Justin Saya, Defy Medical Group Practice; adult endocrinology, Tampa, FL
7. Dr. Jennifer Miller; pedi endocrinology, Gainesville, FL
8. Dr. Nelly Mauras; pedi endocrinology, Jacksonville, FL
9. Dr. Brian Childers; pedi general practice, Douglas, GA
10. Dr. Timothy Petersen; adult endocrinology, Virginia Beach, VA
11. Dr. Rebecca Ryder; adult gynecology, Chesapeake, VA
12. Dr. Jose Alvarado; pedi general practice, Salisbury, MD
13. Dr. Andrew Scrogin; adult endocrinology, Auburn Hills, MI
14. Dr. Jennifer Abuzzahab, pedi endocrinology, St. Paul, MN
15. Dr. Tayma Shayna, pedi and adult primary care, Sugarland, TX
16. Dr. Charles Upchurch, adult endocrinology, Charlotte, NC
17. Dr. Christian Roth, pedi endocrinology, Seattle, WA
18. Dr. Kathryn Weaver, adolescents and adults, endocrinology, Seattle, WA
19. Dr Bethany Peterson, adult gynecology, Katy, TX
Australia
1. Dr. John Hart; adult functional and integrative medicine, Sydney, NSW
2. Dr. Rory Clifton-Bligh; adult endocrinology, Sydney, NSW
3. Dr. David Torpy; adult endocrinology, Adelaide, SA
4. Dr. Andrew Oliver; adult general practice, Lake Cathie, NSW
5. Dr Nick Davies; adult general practice, Gorokan, NSW
Canada
1. Dr. Jill Hamilton, pedi endocrinology, Toronto, ON
2. Dr. Alexander Chesover, pedi endocrinology, Toronto, ON
3. Dr. Munish Khosla; adult endocrinology, Calgary, AB
New Zealand
1. Dr. Helen Smith; pedi and adult holistic practice, Auckland
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