Monday, May 4, 2020

128) Good news for HO sufferers: promising results from a new drug, Tesomet

Saniona is a Danish-based pharmaceutical company which has recently issued a press release about some exciting news for HO sufferers: the results from their phase 2 study are promising! I have recently had the pleasure to interview Rami Levin, the CEO of Saniona and he and I spoke about the promising and exciting new developments with their new drug for hypothalamic obesity, Tesomet.

If and when the FDA approves the next phase of study, it will be a multi-site study taking place in the United States.

Please click here for the podcast interview of Rami Levin.

For Saniona's Power Point presentation on Tesomet's phase 2 trial for HO, please click here.

Friday, January 31, 2020

127) Long overdue update on Sasha and updates on literature and providers

It's been a long while since I've updated the blog or made an update about Sasha.  In short, he is doing well.  To date, Sasha has been using oxytocin for just about 3.5 years. He continues to use 6 iu/day intranasal oxytocin and 50 mg/day naltrexone. He is holding steady with his eating behaviors.  Although he tolerates carbohydrates well and eats a moderate amount of complex carbs (whole grains, starchy vegetables, pasta) in his diet, he avoids sugar because sugary foods do seem to incite an addictive process in him. It's hard to know if this is due to hedonic hunger common to survivors of craniopharyngioma who develop hypothalamic obesity and hyperphagia, OR if it is the ordinary (addictive) reaction that many people experience after ingesting sugary foods.  In any case, we know that Sasha has a much easier time managing his hunger if he avoids eating sweets.  When he does eat sweets, he begins to crave more sweets. Without eating sugary foods, Sasha can still enjoy a variety of foods and does not feel deprived. His BMI is stable (height is 6'1", weight is 168 pounds).

As far as his lifestyle and quality of life: although he doesn't play sports, he keeps reasonably active as the physical education aide for an adaptive PE class, takes walks in the neighborhood, goes to the gym and on a lot of trail hikes on the weekends. Since I have last posted about him, he turned 17 and has a part-time job as a child care worker in an after school program for elementary school-aged kids. For fun, he enjoys playing Magic-the-Gathering and plays guitar in a rock band.

By the way, I've (finally) updated the research literature on oxytocin in the blog for those of you who are interested in collecting relevant research articles to learn more about oxytocin or to share with your physicians.

I know that in the last several months since I've last written in the blog, more people have been able to get their physicians to prescribe oxytocin.  I'm always eager to hear about people's experiences and happy to answer questions. This blog is shared with many different Facebook groups so please feel free to share your experiences and ask the questions in the blog so that others may see the questions and the answers.

If you know of a provider who is willing to prescribe and willing to be listed in the blog’s provider directory please share the names of your oxytocin-prescribing physician, their location (city, state, country), and specialty (pedi, adult, endocrinology, family medicine, etc) and I will list the info in the blog so others can also find willing prescribers.  Thank you!

Friday, October 25, 2019

126) Good news continues for Sasha and others with HO and hyperphagia

I continue to hold hope for those who suffer from hypothalamic obesity and hyperphagia.  As you may recall, before my son started oxytocin (and added naltrexone), he had unrelenting hunger and engaged in regular food stealing and stashing.  It's now been over three years on 6 iu oxytocin nasal spray and naltrexone (decreased from 100 to 50 mg in the last few months with no remarkable difference).  We give him a much more generous allowance for carbohydrates so long as they are not processed sweets.  He eats moderate bread, pasta, starchy vegetables, fruit, etc. and it doesn't appear to affect his food intensity; however, processed sugary foods do cause him to get "hooked" so he avoids sugar consumption and this seems to keep his hyperphagia in check. His BMI is higher now with the increased carbs but it is still 22.8 (185 cm tall, 78 kg heavy).  Of course, if weight gain becomes a problem for him, we are confident that decreasing his carbohydrates will help him lose the weight.

I am very pleased to report that he now has a part-time job (he is a junior in high school) working as a child-care assistant at a local after-school program.  He is so proud of himself for being able to do what he loves to do (work with kids) and get paid for it.  I am amazed (and still a bit nervous) that he is now being entrusted to be around other people's food since we used to get phone calls all of the time (before oxytocin) about his food thefts and emotional meltdowns at school related to food. He appears to be committed to doing a good job and knows that he is challenged every day he goes to work and has to make smart choices about passing up the opportunity to help himself to sweets that are available for the taking. I'm keeping my fingers crossed that he keeps up the good work!

Other good news... the last time I blogged, I wrote about a mother who has done incredible medical sleuthing to help her son and I promised that would provide an update on him.  Well, he continues to do very well on the antihistamine and flavonoid treatment which has drastically decreased his hyperphagia, weight, and resistance to start and complete tasks (treating the Pathological Demand Avoidance, a cluster of symptoms found within autism spectrum disorder).  In addition, there are another two boys with HO (secondary to craniopharyngioma) who have also responded beautifully to this antihistamine (plus flavonoid, in one boy's case). I was planning to share the details of this good news in Hope for HO however...

... learning about this amazing discovery and seeing it help others, I was inspired to start a podcast!

The podcast will be called "Dr. D-I-Y" and it will feature guests who have been motivated to help themselves or their loved ones in areas where the medical establishment has fallen short; I will interview these resourceful individuals on their D-I-Y solutions.  For my first episode, I will feature the mother who found success through this antihistamine and flavonoid treatment and sharing her remarkable D-I-Y story.  Stay tuned for the trailer episode which I hope to release in a few weeks.

I have a few other interesting stories lined up and I'm also open to learning about other D-I-Y stories... so let me know if you or someone you know would like to share a story about having found relief from a difficult-to-treat medical condition. I'm especially interested in stories that might shed new scientific light on the medical condition and maybe even change the course of treatment for the condition.

Monday, July 8, 2019

125) New Hope for HO- mast cell activation and antihistamines

We, the parents of kids with rare diseases, become default experts of their medical conditions in order to find answers where the medical profession falls short.  We read the research literature, network with other parents/patients in similar situations, network with experts, and act as sleuths to solve problems that doctors cannot solve; we do it out of love and out of desperation. One such mother is CM (who prefers to remain anonymous for now).  CM has been a relentless medical sleuth for her son's idiosyncratic and idiopathic conditions since his birth and I am very excited to share an interview of her on her recent discoveries that provide even more hope for HO and more!

  1.  Please give a brief description of your son’s medical history

Since birth my son has experienced unusual difficulty regulating stress. But aside from situational stress regulation, he has had no other social, intellectual or emotional issues. It’s been a baffling and frustrating experience for him. Difficulties escalated at age 12, likely with the onset of puberty. Serious and sudden depression began at this age along with strong Cushings-like features. He reported constant hunger and began intense food-seeking. Depression was treatment-resistant to several trials of psych meds from ages 12-16. Professionals often remarked that he was not a typical case. 

At age 19, lab work revealed endocrine issues and much of his puzzle began making sense. At age 20, a week-long visit at the National Institute of Health confirmed that the issues were hypothalamic in nature. Doctor’s believed that my son had something resembling Froelich syndrome, but they did not know the cause and assumed that it might be genetic. Whole exome genetic testing was ordered for my entire family, but nothing was identified.

[Note that my personal hypothesis is that my son’s endocrine issues relate to his time in utero. I have an auto-immune condition called antiphospholipid syndrome that causes my blood to clot too well and can cause issues during pregnancy. My son was not growing well because of my blood clotting and was considered to be growth-restricted (IUGR). I was given three full courses of betamethasone to increase lung growth before his premature birth at 34 weeks. This dosing would be considered excessive today.]  

2.         What treatments have you tried in the past to help your son?

Unfortunately, we did not know the origins of our son’s condition for many years. His HO behavior began at age 12.5 along with very serious, suicidal depression and sleep issues. We began traditional antidepressants and other psych drugs. These consistently made problems worse and also caused adverse side effects. After four years of trying different medication combinations, we had him tested for genetic markers that relate to psychiatric medicines and learned that he was lacking liver enzymes to process many psych drugs. We turned to Neurofeedback (NF). Although NF didn’t bring fast relief, over time it helped him normalize his sleeping hours and resolved his depression. We could see by his EEG that his brain waves were functioning much better. He felt much better too, but issues remained. His daily life was still impaired by the constant hunger, serious fatigue (even with better sleep patterns), and an inability to complete basic work tasks. Additionally, he was dealing with severe Seasonal Affective Disorder (SAD), making the winter months very tough. 

When we did finally learn of his hormone deficiencies, he was 19. I quit my job and began my research, looking for connections. So much now made sense, but there were still questions.  Treating the hormones helped greatly with the fatigue, but problems still remained. The HO and SAD did not resolve with the hormone treatments, and his ability to complete basic tasks remained a curious problem that didn’t fit the endocrine pathology. In fact, it was this inability to do the things he wanted to do that bothered him most and confused me greatly. 

His local endocrinologist was fantastic and assisted me as we explored novel treatments based on the research I was doing. Overtime, we tried several approaches including oxytocin, metformin, Victoza, ADHD medication, and micro-dosing of dexamethasone. None of these treatments helped much and we discontinued the trials. But I continued to amass research as I tried to understand the biology and think through new options. 

3.         For which vexing symptoms have you found successful treatment?

Demand Avoidance
The most vexing symptom to our son was his inability to complete things that should be easy. This problem bothered him most and made very little sense to anyone who observed him. Tasks that were demanded daily, like brushing his teeth or doing homework, were the hardest. Doctors at the NIH called this an “atypical psych symptom.”

The only other population who seemed to experience this unusual problem was the autistic population. But our son was not autistic in any other way. He has had full psych evaluations, had seen many therapists, and had years of schooling where no professional thought he was the least bit autistic.

As I researched further, I learned about a sub-classification of autism used only in the UK called Pathological Demand Avoidance (PDA). Proposed criteria as listed on Wikipedia include:
1.     Passive early history in the first year, avoiding ordinary demands and missing milestones
2.     Continuing to avoid demands, panic attacks if demands are escalated
3.     Surface sociability, but apparent lack of sense of social identity
4.     Lability of mood and impulsive
5.     Comfortable in role play and pretending
6.     Language delay, seemingly the result of passivity, often caught up quickly
7.     Obsessive behavior
8.     Neurological signs (awkwardness, similar to autism spectrum disorders)
Wikipedia contributors. (2019, June 21). Pathological demand avoidance. In Wikipedia, The Free Encyclopedia. Retrieved 21:27, July 5, 2019, from

My son ONLY fits the second of these criteria. But I kept this connection to autism in mind as I researched. 
Last fall I was introduced to the work of Dr T.C. Theoharides , he believes that mast cell activation in the hypothalamus is the cause of autism for a subset of the autistic population. This was fascinating to me as I knew that my son had hypothalamic disease of unknown origin and he had one unusual trait that was shared with the autistic population.
I learned that inflammation in the hypothalamus can be exasperated when mast cells (immune cells) react to cortisol releasing hormone (CRH). CRH is released when our body experiences stress. Dr Theoharides believes that these mast cells degranulate, which is sort of like a mini explosion, and affect nearby neurons that influence behavior. He treats with an antihistamine that can cross the blood-brain barrier and a flavonoid supplement that acts as a mast cell stabilizer. 
I began this treatment with my son on March 15th and by April 4th he was noticing changes. I was expecting to be treating the one autistic trait that he hated, his inability to handle demands. 
Turns out we got a big bonus!
Hypothalamic Obesity 
Not only did the demand problem show improvement, the HO with hyperphagia has shockingly resolved! His constant hunger subsided. Of course his hypothalamic obesity has been a seriously vexing problem too and it was contributing to horrible weight gain and the related problems that accompany metabolic syndrome and morbid obesity.
Because of the appetite decrease, he began to employ intermittent fasting in an attempt to lose weight. This would have been impossible prior to treatment. My son is 5'10"  (177.8 cm) and on March 28, he weighed 337 pounds (153 kg). He’s been actively trying to lose weight this way with for the last three months and is now 293 pounds (133 kg), down 44 pounds (20 kg). Now that his hunger is controlled, losing weight is far less work now compared to before when he was trying not to binge every night. 
Iron, WBC & Insulin Normalize
But there was more! Labs run seven weeks after starting the treatment had some great surprises. Iron which had been chronically low when my son wasn’t supplementing was fully normalized even though my son hadn’t taken iron in seven months. Additionally his chronically high white blood count and insulin level both normalized too. 

4.       What medicines and at what doses is your son using?

For Growth Hormone Deficiency (diagnosed April 2017)
  • Omnitrope 0.6 mg -injected daily 
For Hypogonadotropic Hypogonadism (dx April 2017)
  • Testosterone cypionate 200mg/ml - 0.25ml (44mg) IM/SQ TIW -injected
  • HCG 250iu SQ TIW -injected
  • Anastrozole 0.30mg po EOD -oral
For Hypothyroidism (dx April 2017)
  • Liothyronine 50mg ( 25mg 2x/day) -oral
For Seasonal Affective Disorder (treating since late summer 2018)
  • Bupropion XL 300mg (added mid-Aug 2018, started 150 and went up after 3 weeks) -oral
  • Desvenlafax Succ ER 12.5mg  (added 9/13/2018) -oral (only a small dose is tolerated)
For Inflammation (began 3/15/2019): these are the featured medicines of this interview
  • Hydroxyzine HCL 25mg-  2x/day -oral
  • Neuroprotek (flavonoid supplement containing Luteolin, Quercetin, Rutin) 4-6 per day, although he started with 2/day for the first four weeks -oral
Other Supplements:
  • Vit C (500mg) -oral
  • Vit D3 (42,000iu/ week) -oral
  • Multivitamin (no iron) -oral
  • ProbioMax Lean DF probiotic (began 4/25/19)

5.          How did you discover the treatment? 

An internet friend who knew of my son’s diagnosis forwarded me a video by Dr T.C. Theoharides entitled  Brain Allergy and ASD.  There was no mention of hormone deficiencies or hypothalamic obesity but I watched intently wondering if my son’s hypothalamic dysfunction could be tied to inflammation.

My previous research had been focused on the endocrine effects of over-exposure to steroids in utero. I had learned from this work that there are immune system effects as well as endocrine effects, but I didn’t understand the immune component.  

I then gleaned more specific information about the actual treatments that Dr. Theoharides was using by listening to podcast interviews and taking notes. I shared the findings with his endocrinologist who was very positive about doing a trail of treatments:

Some articles of interest: 

***Note that these articles suggest that an H1 antihistamine like hydroxyzine would be contraindicated for obesity. Yet, the opposite is occurring in my son’s case and he reports that his hunger is significantly decreased when he takes Hydroxyzine. More research is needed to understand this paradox. But clearly there exists a relationship between histamine receptors and feeding behavior.

6.         What is the theory of how treatment is working?

The hypothesis goes like this: 

Brain inflammation, particularly inflammation in the hypothalamus, was an unidentified problem for my son. This inflammation was made worse by any and all stress he experienced in life. Stress would cause his hypothalamus to produce higher amounts of cortisol-releasing hormone (CRH) and the CRH would trigger a reaction, like an allergy, that would in turn trigger neurons in his hypothalamus that adversely affect behavior and increase hunger. 

Treating with anti-inflammatory agents that can cross the blood-brain barrier would theoretically bring down the inflammation and stop the allergic-type reaction. In my son’s case behavior and hunger are improved, hunger drastically so! 

Specifically hydroxyzine and flavonoids (Luteolin, Quercetin and Rutin as found in Neuroprotek) were trialled with success. 

7.             How might these treatments may be helpful to persons with similar conditions?

The treatments we are using were developed for a subset of the autistic population thought to be suffering from brain and hypothalamic mast cell (immune cell) issues.

My son’s condition was marked by one autistic-like symptom, along with hormone deficiencies, hypothalamic obesity and premature gray hair. 

It’s interesting to note that individuals with Prader-Willi syndrome also exhibit autistic-like symptoms, hormone deficiencies, and hypothalamic obesity. Informal surveys on in the craniopharyngioma Facebook groups also indicate that the cranio population exhibits some autistic-like characteristics as well as the more commonly experienced hormonal deficiencies and HO.

I currently know of one craniopharyngioma teen* who is trying an antihistamine based on my son’s success. This young man is also reporting notable weight loss and positive behavioral changes based on six-weeks of treatment. 

Could others benefit too? We surely hope so!

* ADDENDUM (by Eugenie)
I have been in contact with the mother of this cranio teen boy with HO and she has also reported some remarkable findings with her son's use of an antihistamine.  Interestingly, she noticed that he seemed to lose weight without reason or intention in the month of August; about 1 pound per week. He would strangely regain the weight in September. After learning about CM's discovery, she realized that it was probably because her son always took an antihistamine medication to help with his seasonal allergies only in the month of August. Since learning of CM's success, she has re-administered the antihistamine (citrazine, 10 mg, a super inexpensive OTC Costco-brand drug, lol!) to her son (not for allergies this time) and has noticed weight loss, loss of hunger, less inhibition (acting more like a carefree, playful teenager), less inflammation (less "puffy"), more motivation, and better heat tolerance. In the last six weeks since starting citrazine, her son has lost almost 9 pounds (4 kg) in only 6 weeks without really trying.

As both of these cases are only in the first several weeks of their results, I will post an update in a few months on the progress of these young men.  

If, after reading this post and investigating the links, you have questions for these moms, please post them under comments on the blog.  This will help economize their time and help all readers (from various FB groups) be able to see the answers.  Thank you.

Tuesday, July 2, 2019

124) Happy 3rd Anniversary, Hope for HO!

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!

Friday, April 26, 2019

123) Pediatric pituitary tumor conference notes + Sasha update

On March 16, 2019, Children’s Hospital of Philadelphia held a one-day conference for families affected by pediatric pituitary brain tumors. This inaugural conference was a great success and gathered people in attendance from all over the United States to learn about the effects of tumors affecting the hypothalamic pituitary adrenal (HPA) axis. Many more would have come were it not for the distance. Although video streaming was not available the day of the conference, the speakers have made their presentations available.

Here they are:

I learned that due to the success and the obvious need for such a conference, CHOP will be organizing a conference next year as well, date TBD, likely in March or April of 2020. Besides the info gathered at the conference, it was additionally wonderful and invaluable to get to meet other families who have been affected by these brain tumors.  For me, it was great to put a face to a name since it was an opportunity to meet people with whom I had interacted previously through social media only. I hope that more people will be able to attend next year!

Quick update on Sasha: he is doing well.  For the past 2.5 years, Sasha's homeostatic hunger has definitely been successfully treated by oxytocin/naltrexone. The evidence is shown by his ability to live with a fully open kitchen, not distracted by his hunger, not constantly obsessed with food, while able to eat moderately and at appropriate times. His weight also remains stable in a healthy normal range of (BMI= 22.4). However, hedonic hunger is a different matter. For those who don't know what I mean by "homeostatic" versus "hedonic" hunger: homeostatic hunger is the drive to eat due to true hunger.  You know when you have homeostatic hunger because your stomach growls, you feel hungry, and you are apt to eat what foods are available to you.  Hedonic hunger is that feeling of wanting to eat for pleasure, even if you aren't hungry, (for example, having an appetite for dessert even after a large meal). 

One could argue that hedonic appetite may be partly responsible for the world's obesity epidemic. For Sasha (and probably for many), eating processed sugar exacerbates his hedonic hunger, causing cravings for more sugar and creating a vicious cycle of addiction.  Like alcohol, sugar is legal and omnipresent in our society.  Some people are able to responsibly and reasonably handle a moderate consumption of alcohol; those who cannot are deemed alcoholics. In a parallel fashion, some people can handle a moderate consumption of sweets while others cannot.  I think that Sasha is understanding that he may be the type of person who is unable to consume sugar without it causing him to feel like an addict (thereby creating a terrible cycle of craving and seeking, with adverse consequences).  We have suspected this sugar addiction for a long time but it was not up to us to convince him (mainly because he didn't wish to accept it).

As he grows more mature, he appears to appreciate the (aggravating) role that sugar plays in his life. Recently, Sasha demonstrated his maturity and insight by a decision he made to skip an (Easter) holiday dinner with family friends because he knew that it would be too triggering for him (due to Easter egg hunts, lots of desserts, etc.).  He volunteered to make other plans with another family friend and he told us that he was very glad he did.  Although it was a little sad to have him not join the rest of the family at this dinner, it was a decision he made for the sake of his physical and emotional health.  I am proud of his smart choice and hope that he will continue to act with wisdom.

Monday, March 4, 2019

122) Sasha update & oxytocin questions to ask at the CHOP conference

Quick update since I haven't posted anything about Sasha in Hope for HO for several months.  In my last post about him (October 24, 2018), he was getting used to having his own spending money and having his ups and downs with buying sweets and with weight fluctuations...

Sasha is still learning his lessons and feeling humbled re: sugar.  Over the holidays, he overindulged in sugary desserts which got him a bit hooked.  From Thanksgiving (late November) to Valentine's Day (mid February), he was buying cookies and muffins at the school cafeteria on a regular basis and eating sweets at all the parties that abound during the holidays. During these few months, he gained about 2 kilos (4-5 pounds).  He has since realized that he is weak and unable to eat sweets on a regular basis without feeling hooked by them; he is now abstaining from regularly indulging in cookies, muffins, etc. In the short 2+ weeks he has not been eating sweets from the school cafeteria, he has lost 3 kilos.  At 76 kilos (167 lbs), now he weighs less at 185 cm (6'1") tall than he did when he started the oxytocin experiment 2.5 years ago when he was only 170 cm (5'7")  tall.

For Sasha, the weight loss is a side effect from laying off the sugar because it is the experience of being unhooked by the power of sugar cravings that is the primary effect and the ultimate reward for him. Interestingly, he does not seem to get this addiction feeling and behavior when he eats complex carbs.  He eats a moderate amount of pasta, starchy vegetables (potatoes), beans, fresh fruit, whole grains, etc. with little impact on his weight or cravings. It's the REFINED SUGAR that is the culprit for him. For his own sake, I hope that he can continue to make his own good choices about how he wants to live his life.  I expect that he will "relapse" again in the future by getting into cycles of eating sweets but I hope that he can figure it out and regain his footing when that happens with more life experience and emotional maturity. For 6 years following his brain surgery and before trying oxytocin, I was the Kitchen Bitch, commander in chief of the Food Police, and enforced control where he could not. With the help of oxytocin, I've been able to retire from being KB; he's gained his freedom, his improved health with normal BMI and normal appetite. As much as I'd like to help, it's really up to Sasha to figure out how to resist the temptations of sugar by making good choices for himself.

Switching gears...

The inaugural Parent Pituitary Conference at the Children's Hospital in Philadelphia (CHOP) is happening in less than two weeks on March 16, 2019! Our craniopharyngioma group has been wishing for this conference for so very long and it is so wonderful it is actually going to happen!  Thanks again to Amy Wood of the Wood Foundation for spearheading this effort and coordinating with the conference director (Craig Alter, MD) to make it happen!

Among the presenters, Shana McCormack, the PI of the oxytocin and HO study, will be presenting on oxytocin and HO and I am very curious about what she will share.  Because I believe her study is still ongoing (and that she may even still be recruiting subjects?), she may not be at liberty to say much about her findings thus far.  Nevertheless, I have some questions to ask:

1. Is there a clinically meaningful way to measure oxytocin levels in those with suspected or demonstrated hypothalamic damage and respective clinical markers (HO, hyperphagia, social impairment, etc.)?  Since oxytocin is not typically replaced, what biomarkers might indicate that oxytocin might be a beneficial therapeutic agent?

A recent study showed that plasma oxytocin levels were higher in those with hypopituitarism (compared to normal controls) and highest in hypopituitary patients with diabetes insipidus compared to normal controls. Why? This ironic finding also begs the question: should plasma oxytocin levels be used as a way to determine whether oxytocin is indicated for treatment in patients with hypopituitarism and even in patients with posterior pituitary damage? What is the most meaningful and accurate way to measure oxytocin levels in a patient? How do the various tests (blood, saliva, urine) compare in measuring oxytocin levels?

2.  How does oxytocin replacement differentially affect these patient populations:

  • Those with demonstrated damage to paraventricular nucleus and supraoptic nucleus (areas of the hypothalamus that produce oxytocin) versus those who do NOT have demonstrated damage to PVN and SON?
  • Those with rapid weight gain and obesity but who do NOT have excessive appetite (hyperphagia) versus those with rapid weight gain and hyperphagia?
  • Those with BMI over 25, over 30, over 35, etc.
  • Male versus female patients
3. Is there a formula for optimal oxytocin dosing or is it based solely on individual response? 

4. Does chronic dosing cause tachyphylaxis (receptor burnout) and if so, what is the best way to prevent it?

5.  Are there common side effects found in patients trialling oxytocin and at what doses do these side effects present?

6. How does oxytocin interact with the other hormones (sex, corticosteroids, T4, T3, ADH, GH)? How common is it for patients with diabetes insipidus to need to decrease or cease their desmopressin Rx due to being on oxytocin?

7.  What will it take (how many studies, what type of evidence, how many years) for the FDA to approve oxytocin as a therapeutic agent to be used to treat panhypopitutiarism and/or hypothalamic obesity?

I know some of my questions may not have clear answers yet. I imagine some of you (especially those who would like to but cannot attend the conference) may have your own questions.  If so, feel free to post them here under comments in this blog so that everyone reading may see your questions (since I post this blog on multiple FB groups).  If it looks like something she might be able to answer, I will do my best to also pose the question to Dr. McCormack.

To those who are planning to attend the conference in Philly on March 16, I look forward to meeting you then!