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.

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!

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.

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 https://en.wikipedia.org/w/index.php?title=Pathological_demand_avoidance&oldid=902800995

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:

1.     All Things Mast Cell with Dr. Theoharides

2.     Interview with Scott Forsgren: Mast Cell Master

Some articles of interest: 

1.     Is a subtype of autism an allergy of the brain? 

2.     Mast cell activation and autism 

3.     Mast Cell Activation in Brain Injury, Stress, and Post-traumatic Stress Disorder and Alzheimer's Disease Pathogenesis

4.     Thyroid Hormone, Thyroid Hormone Metabolites and Mast Cells: A Less Explored Issue

5.     Brain "fog," inflammation and obesity: key aspects of neuropsychiatric disorders improved by luteolin

6.     Flavonoids: A Promising Therapy for Obesity due to the High-Fat Diet

7.     Involvement of hypothalamic histamine H1 receptor in the regulation of feeding rhythm and obesity.***

8.     The Histamine H3 Receptor and Eating Behavior ***

***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.

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!

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:
https://www.chop.edu/centers-programs/neuroendocrine-center/resources-for-professionals

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.

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 https://www.ncbi.nlm.nih.gov/pubmed/30656597 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!

121) Parent Pituitary Conference at Children's Hospital of Philadelphia (CHOP)

CHOP will be hosting its inaugural conference for families of children with pituitary and hypothalamic tumors.  The conference will be held on March 16, 2019 in Philadelphia, USA and will feature a day of learning and sharing information related to the chronic aftermath of hypothalamic-pituitary-adrenal axis disease including adrenal insufficiency, diabetes insipidus, hypothalamic obesity, sleep and energy dysfunction, sex hormone deficiencies, and problems related to neuropsychological development.

Registration is open and a group rate is offered for a nearby hotel.  See link for information:
https://chop.cloud-cme.com/default.aspx?P=5&EID=876

Hope to see you there!

120) Letter to the Editor to Obesity now published

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/

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!

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

117) Progress continues with Sasha and the case report

It's now been over two years since Sasha has been on oxytocin (+ naltrexone) and he is continuing to do well.  His former lower carb eating plan has become increasingly lax... it seems that having a slice of toast with his eggs in the morning or rice at a Chinese restaurant or a pizza dinner has not made any impact on his weight.  Relaxing the carb restrictions has made for a more mellow lifestyle in our family.

The most impressive improvements of late in Sasha have been around his ability to manage his weight even with his own spending money.  Before oxytocin (and for the first 18 months into the experiment), we never dared let him have any spending money for fear he would spend it all on junk food and gain excess weight on it.  At the end of his freshman academic year (May-June, 2018), he was given the privilege to carry money to school to spend it how he pleased. We knew that he was going to have to learn how to handle money and all the sugary temptations out in the world so we decided it was important for him to learn about it sooner than later. Well, as we predicted, he took full advantage of this new privilege and bought cookies at school, perhaps even every day. Not surprisingly, he gained weight from all the cookies he was eating.  He liked the cookies, but not the weight gain. During the summer being away from the cookies at school helped him level out his weight and he even lost a few kilos on our active summer trip to Europe in late June/early July and throughout the summer.

Photo of Sasha taken yesterday:
Age 15: 6 feet, 1/2 inch tall, 170 pounds

Sasha started his sophomore year in September and so far, he has been able to exercise better control and discipline around his cookie buying habit. Somehow he has made decisions to refrain from the cookie buying and when I asked him how or why he doesn't buy cookies, he says, "because I don't want to gain the extra weight."  Sasha is now 184 cm (6'0.5") tall and 77.3 kg (170 pounds) heavy and his BMI is 22.8. After losing the extra cookie weight in the summer, he has kept his weight in this range since August. I know that he is (aren't we all?) always at risk of succumbing to the seduction of cookies so it will be something that I hope he can manage with moderation.  So far, he seems to be doing a great job and I am impressed.

I am also pleased to report that so far, our JCEM case report has been cited five times in other peer reviewed journals: https://scholar.google.com/scholar?um=1&ie=UTF-8&lr&cites=3043971027459005670.  The review articles all point to the lack of effective treatment for HO and I am now trying to get a Letter to the Editor published in one of these journals to address this problem. Although I have already been turned down by Endocrine Reviews (they have a policy of only publishing Letters to the Editor that point out major errors in previously published materials), the kind and supportive note from the Editor-in-Chief has left me feeling encouraged about continuing to try with other journals. It is my intention to piggyback on our report and to share that my son has continued to reap the benefits of oxytocin and naltrexone to enjoy a normal relationship with food and a normal weight. I hope to convey my belief that the dearth of effective treatment options and  the poor quality of life of HO sufferers begs for an open-minded approach to treating this challenging condition and that I hope more endocrinologists become willing to try more cutting edge approaches (such as oxytocin) with their HO patients.

116) ACT for anxiety- tips for managing worry

It's funny...I have been writing in this blog for over two years on HO, oxytocin, and sometimes on my role as a special needs parent but I have not written much at all about mental health care despite my professional role as a clinical psychologist.  I guess it didn't occur to me because mental health treatment was always thought to be my career job while Hope for HO was thought of as a forum for my role as a parent.  For some reason, I recently saw a Facebook post from a very worried individual that reminded me that I might have some helpful info to share with those who are struggling with anxiety and stress.

I specialize in treating people with anxiety disorders and I have always enjoyed working with those who are anxious because I conceptualize anxiety as an "excess of caring"- therefore, anxious people are often the most earnest and caring people in the world.  Think about it: if you didn't care about something or someone, you wouldn't feel anxious, right? We worry about the welfare of our loved ones because we care about them. We make our way quickly across the street when we see a car coming because we care about and prefer to avoid getting squished by an oncoming car. In other words, anxiety is a very normal and healthy response that signifies that we care about something.

So why does it feel so bad to be anxious if it's normal and signifies caring? I think the problem with anxiety arises when the worry or anxiety is not channeled to a constructive end because (1) you are worrying and struggling about something that is not within your control and/or (2) you are avoiding taking constructive steps to do something that is within your control and/or (3) you are taking steps to do something that is within your control but it doesn't agree with your set of values or is not effective.

According to the Serenity Prayer (a mantra used in 12-Step meetings):

"God, grant me the serenity to accept the things I cannot change, the courage to change the things that I can, and the wisdom to know the difference."

It's definitely the "wisdom to know the difference" that is the tricky part! So much time and energy is wasted trying to control what we can't control and so much agency is lost when we do not act on what is within our control. On the list of common things we try to control and wish we could control but can't: other people's behaviors, thoughts and feelings; the past; the future. Sometimes we are not even in control of our OWN behaviors (e,g.:accidents) or our OWN thoughts and feelings (e.g.:worries, other unhelpful thoughts).

Worrying about and trying to control things we can't control will only cause us to feel impotent and more anxious. In addition, anxious people struggle to have certainty in an uncertain world and this is also very distressing; in fact, the very act of insisting on having certainty (in an uncertain, inconsistent and imperfect world) is also another recipe for more anxiety and stress.  What's really ironic to me is that many anxious people tend to have such a high intolerance of uncertainty that they end up making up the "end of the story" just to have a conclusion even if the conclusion is a terrible one! We've probably all done this and later realized that the apprehension and prediction we had about something in the unknown future ended up being so much worse that the actual outcome. In this situation, we used our energy to conjure up a terrible end of the story when we could have used that same energy on something else and perhaps saved ourselves a lot of mental anguish.

On the flip side, if our problems have concrete steps that can be taken but we do not take the steps to do something to address the problem, our problems will only be prolonged and exacerbated through this denial/avoidance.

What to do? There are several helpful psychotherapeutic approaches for handling distressing emotions such as anxiety including Cognitive Behavioral Therapy (CBT), Dialectical Behavioral Therapy (DBT) and Acceptance and Commitment Therapy (ACT). My personal favorite is Acceptance and Commitment Therapy (ACT). ACT is a therapy approach that combines the serenity of mindful acceptance with the practicality of behavioral activation and the wisdom of acting/living in accordance to one's values.  Sometimes we are fortunate to have worrisome problems that are within our control to address. To address the problems within our control, we apply our available resources and follow through with an action plan. The problems not within our control are much harder to handle; in these cases, it is best to radically accept this fact and refocus our thoughts, feelings, and behaviors on something else that is within our control (valued commitments). Simply put, ACT can be broken down into this acronym: A= Accept (reality for what it is), C= Choose (to focus and live in accordance to one's values), T= Take action (on those valued commitments to live a meaningful life).

As mentioned above, even our own thoughts and feelings cannot always be controlled. In our frustration of not having control over our own thoughts and feelings (worrisome thoughts are good examples here), we end up judging ourselves, telling ourselves,"why can't I stop feeling and thinking this way", "snap out of it!" etc. Instead of struggling with our undesirable thoughts and feelings, we can accept that they are there and make space for them.  It is important to note that acceptance DOES NOT mean approval. Acceptance means simply that you recognize reality for what it is, period. I accept that my son has very serious chronic medical conditions that may require our lifelong management. I don't like or approve of this fact... but I fully accept it.

ACT is often described with metaphors: if you are swimming in a lake with a bunch of beach balls and the beach balls are symbols of your undesirable thoughts, you can choose to use your energy to banish the balls from your view by trying to hold them down underwater (which requires a lot of effort) OR you can just leave them alone and let the balls float around you. Instead of focusing on the balls, you can choose to focus on other aspects of your lake experience (the sunshine, the temperature of the water, the company of friends, etc.).  We may not be able to control the uncontrollable, but we CAN learn to have a more accepting attitude towards what is not within our control. This letting go is liberating because it frees us from the struggle to change the unchangeable and allows us to refocus our energies on our valued commitments.  Refocusing on our values helps us live a life by design and not by default or at the whim of our passing emotions.

Ok, now that I've explained the theory, how would the ACT approach work when applied to a challenging situation common to a brain tumor survivor, for example?  Let's take the example of a parent who worries (for good reason) about the health and welfare of her child who suffers from chronic medical conditions, including adrenal insufficiency.  Adrenal insufficiency (AI) is a medical condition that requires a good degree of vigilance to manage since stress or illness can cause a life threatening situation (adrenal crisis) and lead to death if not handled with prompt and proper treatment. My son has AI so I understand the gravity of this disorder and I recognize that it is easy to worry about a person with AI...

What if he gets sick, has an adrenal crisis and dies?
What if he gets into a car accident and has an adrenal crisis?
What if he is without his Solu Cortef injection when he needs it?
What if he's alone and loses consciousness and can't call for help?

These kinds of worries probably cross the minds of the caregivers and of those who suffer from this condition. If we use the ACT approach, we would first accept what we cannot control: the fact that the person has AI, when an illness/stressful situation may strike, whether or not the ill person/others will be able to respond in a timely way to their illness, etc.  We can then choose how we want to handle these facts based on our values: if we value having a certain active lifestyle with many activities, we can make choices to provide a life that supports these activities, even with the condition of AI.  We would need to take action by ensuring that the needed medicines are available, key people are trained to deliver the medicine in case of an adrenal crisis, the person with AI has a medical alert tag worn at all times, the person with AI and others get trained in knowing the circumstances that would require stress dosing, etc. Even if all the boxes are checked and everything that is controllable is done, anxiety may still persist because life is full of uncertainties!

Different people with AI may choose to live differently with their condition, depending on their values.  Person A who values safety/caution as #1 may choose to live a much more conservative life and perhaps choose to avoid activities that he considers too high risk for himself; person B with AI values adventurousness and may make very different choices.  Person B may choose to take those risks because adventure, for her, contributes greatly to living a meaningful life.  Person B knows the risks and feels the anxiety associated with these risks but still chooses to go on the adventure; in fact, person B may need to take her anxiety along on her adventure! There is no right or wrong lifestyle with AI, per se (provided that the AI person knows how to manage it and to stay alive).  According to ACT, life is optimally lived when it is guided by one's values and not by one's default emotional reaction (often anxiety). The only exception to this rule of thumb is if safety happens to be one of the values that is held in high esteem. In this case, the person (like person A) who values safety is also living by his values by design.

When you are feeling anxious... breathe...ask yourself what is within your control and do something about those items and then remind yourself that you've done what you can that is within your control, let go of what is not within your control and focus on something else that can give you meaning in the moment. Here is a handout of the Worry Decision Tree that can help guide you to be more constructive with your worrying: https://www.getselfhelp.co.uk/docs/worrytree.pdf

If you are intrigued by the ACT approach and want to learn more about it, here is the website: https://contextualscience.org/act.  Under the left side menu of ACT for the Public, you can find self- help resources, free audio exercises and free videos.