110) Finding balance in our circus act of life

Ordinary life sometimes feels like a circus act.  Trying to manage all the complications of complete hormone loss DEFINITELY feels like a circus act! In our case, when I realized that some of the therapeutic effects of chronic oxytocin treatment wear off over time, I started to experiment (again) with finding an optimal dosing schedule. We have done a 10-day washout, then added OT back on a daily dose (and saw weight loss again), then went to intermittent every 3-day dosing (which stabilized weight for a while), then returned to daily dosing again (because he started regaining weight again).  This experience feels like the act where the circus artist is trying to keep his balance in roller skates while standing on a board that is rolling back on forth on a cylinder... can we find a way to keep oxytocin's therapeutic effects (stable weight) without causing drug tolerance? So far, his weight is wobbling up and down and is staying in the same weight range (give or take 0.5 to 1 kg) in the last two months. He looks healthy to me and it’s certainly possible that weight gain and resultant higher BMI in the last 6 months (to 24.8, the 90th% at 6 feet tall and 183 pounds or 183 cm and 83 kg) now can partly be attributed to his broadening shoulders and more muscle mass- see for yourself:

To make things more complex (and you know those circus artists always keep adding more complicated things to their acts), we decided to test his ability to handle himself with increased food freedom by rewarding him monetarily for his honesty.  First, a little background: even though the oxytocin/naltrexone has been helpful in decreasing his hyperphagia (intense appetite drive) which has permitted us to unlock our kitchen and stop policing him in the home, we still had episodic reports from school that Sasha continued to sneak sweets.  My case report references this as “hedonic food seeking continued in the absence of homeostatic hunger” or something to that effect. The incidents were largely opportunistic; there are often treats in the classroom and Sasha's lower carb lifestyle (dating back to before we ever started oxytocin) has dictated (in his IEP) that he is restricted from indulging in the cookies, cakes, and candies that are often sold or available at school. No fair! I can only imagine how hard this has been for him and it’s no wonder he has resorted to sneaking or grabbing these foods when he felt he had a chance to take them. These food restrictions harken back to the pre-oxytocin days when he was stealing food left and right. "No fair" is certainly true but more important than fairness, we felt that restricting him from sweets was possibly causing him to feel deprived, and causing him feel the need to steal them. Given that we do not want him to continue these behaviors or have to always keep him under scrutiny around sweets or even worse, never give him a chance to become independent, we knew we had to do something.  Ultimately, if Sasha is ever to be come an independent adult in the real world, he will need to learn how to handle himself around all types of food.

At 15 and with only a little more than three years to go before graduating from high school, we decided that we could no longer afford to protect him from sugar.  We decided that it was preferable for him to be "fat and free" rather than "thin and in(carcerated)" and that he absolutely needs to stop sneaking or taking foods that do not belong to him, period.

In case you are wondering about his food; his eating habits at home continue to be about the same as it's been in the last few years.  We keep to a relatively low-ish carb food plan: we eat mostly unprocessed whole foods (high fiber vegetables, meat, eggs, dairy, nuts and seeds, legumes, whole fruit and eat a modest/low amount of whole grains like whole wheat bread, oats or corn).  The main thing we do not keep in the house is processed snack foods or anything with added sugar (with some exceptions like a birthday cake or ice cream for a special occasion).

With the roller skate-wearing-balancing-on-a-board-balancing-on-a-rolling-cylinder act, now we introduce some juggling balls... we have designed a new plan and have given Sasha a goal with a reward.  The goal is to steer totally clear of touching or taking anything (usually high carb foods).  The reward for not stealing food (or trying to cover up or lie about it) is to earn $1 per day for each day of honesty.  The punishment for stealing (and lying about it) is a fine of  $10.  The punishment for merely stealing (but admitting it right away when confronted, no lying) is $5.  There is no statute of limitations so if we receive a report even weeks later, he will still be fined- the fines comes from his savings so each day is a fresh start and he still can earn that dollar if he keeps himself honest.  Also, we have let him know that even suspicious behavior (wandering or loitering uninvited into a room with food, for example) will be counted against him.  In other words, he needs to be totally transparent and behave with vigorous honesty so as not to raise any suspicions. We check in with his teacher (who has his aides make notes on paper every day) at the end of the week for her report.

We've been doing this for about three weeks now and so far, it's going well. He had one slip on the weekend with a family friend (took some food from her but admitted it right away = minus $5) but no actual reports of stealing at school, yay! His teacher reports that he does seem to circle around food to check it out but does not get close enough to touch it. Now for the first time ever in his life, the deal enables him to possess money to spend on... anything he wants. Of course, this means that he can purchase cookies, candy or whatever they sell at the (frequent) bake sales at his high school.

As far as we know, he is taking advantage of his new found freedom and has been seen eating cookies in the morning but as far as we know, it isn’t daily and the cookies are purchased with his own money. I can only hope that the novelty of the cookie buying power will wear off and that he will be able to practice some self control if his weight begins to rise out of control again. “Hope” is the key word here, of course, since I have little control over him now and will definitely have no control when I’m dead and gone. Better to start now training him and take the risks (obesity) than wait until he is 18 and old enough to be prosecuted as an adult for theft. Like I said, better fat and free than thin and in(carcerated)!

You can see how these new juggling balls can complicate the roller skate balancing act. He may very well gain weight and we won’t know how much is due to the limitations of oxytocin versus his ingestion of too many cookies. Oh, well. As much as I would like to have a tightly controlled study environment in a closely supervised and locked laboratory setting, we don't have that and can't have that because it is not real life. For better or worse, we have to prioritize our parenting experiment over our oxytocin experiment.

Life is like a live circus act... there are no guarantees that life or the show will go as planned. Now we are practicing for the removal of the "safety net" and just hope he doesn’t hurt himself too badly when he falls. I suppose we can replace the net if he demonstrates that he can't handle life without it but we have to take it down sooner or later and we owe it to him and to ourselves to see if he can handle it for the sake of his development into a trustworthy, independent adult.

First train the kid with the net, then remove it and hope for the best. Isn’t that what parenting is about, after all?

109) Calling all caregivers, how are you?

This is a post dedicated to the caretakers/parents caring for a family member/child with chronic and/or life threatening illness.

How are you doing?  How are you feeling? How has life been treating you of late? Yes, YOU.

As a caretaker/parent, I don't think we have enough people inquiring into our emotional welfare and asking us these important questions (and sticking around long enough to truly LISTEN to the answer) because we are expected to be resilient and capable (plus the lives of our chronically ill loved ones depend on it). Even if we had someone sincerely asking us these questions, it becomes so hard to answer. There is fear that the answer won't be understood and will result in intensified feelings of alienation, or that it will be judged, or that any words we find will fail to describe the complexity of the experience of caring for a person with chronic and/or life threatening conditions.

In my work life as a clinical psychologist, I truly love my work and feel privileged to be entrusted with the innermost thoughts and feelings of my patients. I specialize in working with adults with severe trauma (mostly childhood abuse and neglect) so witnessing and holding their pain can be a heavy burden. Even though I am a professional, I'm sure it has taken a toll on me over the past 25 years. In spite of the challenges of working in a profession that is intimately involved in witnessing and trying relieve the intense suffering of others, I would still say that "I go to work to relax."

In my home life as a cranio mom, like many of you, I deal with the stress involved in the high maintenance care of managing my kid's chronic health problems and overall functioning. To prove my point, I could provide a long list of all the tasks my husband and I do to keep him alive and optimally well but I am tired (right now) from doing them ad nauseam day in and day out and listing them will make me feel even more tired (so I will spare us all but perhaps you know the list or have your own hellish version of that list). As equally (or even more?) difficult as dealing with the known daily challenges, is the disquieting anxiety that weighs in my mind about his unknown future (what happens after high school, what would happen to him if we weren't here to do what we do to keep him alive and well, will he ever be able to live independently, what will happen to him after we die?)

What is the toll of being a caretaker for a loved one with chronic illness? There is of course the toll on our resources- namely energy, time, and money. There is only a limited amount of resources one has and when so much energy has to be devoted to keeping a chronically and/or acutely sick child alive and optimally well, there's little leftover to be enjoyed. We are 6.5 years into this journey and man, it is a marathon!

Besides the obvious drain on these resources, there is also an impact on our own mental and physical health. Although I choose to take care of my son because I love him and will do everything in my power to provide the best life for him, I would be lying if I told you that it always puts me in a good mood. Hah! Sometimes I catch myself feeling and behaving very irritably because I am exhausted, cranky to the core, and resentful in my reluctant role as a (lame) understudy for his front lobes, pituitary gland and hypothalamus. Those of you who have a kid with poor executive functioning, poor memory, no hormones, and a non-working thirst mechanism will understand what I mean! And this is our life AFTER getting the benefits of oxytocin for his HO and hyperphagia. I am very well aware that we are very fortunate to no longer have to deal with the incessant hunger pangs, food stealing, and the resultant lifestyle of food locking and policing. Our lives were WAY harder before oxytocin but it is still far from easy.

Circling back to my original question, "how are you", I think one of the biggest tolls of special needs parenting/caregiving is the impact on relationships. If one is partnered or married, there is hopefully another parent/caregiver present to share the responsibilities of caregiving but the division of labor with caretaking duties are often not fairly shared between partners. If so, resentments may build up and the tenuousness of an already strained relationship can cause that relationship to falter and fail in the face of the daily stressors of special needs parenting/caregiving. Some marriages form stronger bonds in the face of these crises while other couples default into becoming mere co-parents to their special needs kid. The entire family's dynamics are bound to become affected by the "identified patient" (using a family therapy term) and siblings of the ill child may get lost in the shuffle and have to find their own way while their parents busy themselves with keeping their ill child alive and optimally well.

In my role as a caregiver, I have found myself becoming increasingly isolated from friends. As an extrovert, I have always put a lot of importance in my friendships and social life. Before he was diagnosed with the brain tumor, we had a very active social life with our many family friends. Over the years, I have let many of these friendships dissolve. A major reason for this was due to our need to protect Sasha from eating to excess (before we discovered oxytocin). After years of turning down social invitations from friends, many of these friends stopped inviting us, and who can blame them? Although the food issues played a significant role in our diminished social life as a family, I can't blame it all on the food. I must admit that I have isolated myself because having a child with Sasha's problems has made it painful (at times) to be around his (healthy and typical) peers and their parents. Poor social motivation for peers on Sasha's part has also increased his (and our) isolation since he has become more and more an outsider as the years have gone by. When I see his peers develop in normal and typical ways, it reminds me of what Sasha could have been had he not been sentenced with craniopharyngioma, and it makes me sad. I still have hope for Sasha and will continue to do what I can to optimize his life and future but I can't help but feel grief when I consider the healthy life he no longer has. I guess you could say that seeing his peers and being around their families fills me with a longing that I don't wish to feel. Avoiding these friends isn't the answer, I know, but I guess it's something I've done to cope with our circumstances, for better or for worse.

I am writing for myself to explore the emotional impact of living as a caregiver and to share these thoughts and feelings as it helps me feel less alone. I'd also like to invite my readers (you?) to share your thoughts and feelings about being a caregiver. If you've been feeling cooped up with your thoughts and feelings and want to share about your experiences as a caregiver, feel free to do so. Maybe it will help you feel less isolated, too?

So... how are you doing? How are you feeling? How has life been treating you of late?

108) Chronic administration may require some tricky dosing strategies

Now that we know oxytocin has helped my son decrease his weight and hyperphagia, we have to figure out how to maintain its effectiveness over time. As I shared in my last post (#107), Sasha's weight began to rise alarmingly fast in the last three months. Although he still carries his weight very well (see photo in #107, at his highest BMI since the publication of case report), I was worried about the trajectory and dismayed about OT's failure to help him maintain his weight during these last few months.

I was told about a PWS girl in Europe (who had been using OT for years) who benefited from taking drug holidays every 4-6 months to prevent down regulation of OT receptors.  I was warned that she exhibited behaviors similar to her pre-OT treatment days (extreme hyperphagia) after the discontinuation phase at the time of restarting the OT.  According to this anecdotal report, the child resumed moderate eating and weight loss after ten days of resuming the OT.

I decided that we needed to do something to interrupt the weight gain; we discontinued him for 10 days and restarted him (now on day 12) on OT. For Sasha, we didn't note any obvious changes in his eating habits during the week he had discontinued the OT- he appeared to eat moderately. However, we learned after the fact that he had been buying cookies from the cafeteria and eating them before school.  I don't yet have corroboration from teachers about the timing of the cookie purchases but from what I can tell (per Sasha's report, for what that's worth), he started to buy and eat these cookies at about the time the OT was stopped. I believe he was still eating these cookies up until the 7th day after restarting OT. On the 9th day after restarting OT, he had a meltdown at school over some chocolate Easter egg candies in which he gathered the candies and fled with them (the eggs also vanished after he returned to class, surprise, surprise). The sign of food intensity in the form of a meltdown was totally reminiscent of how he used to be on a regular basis around food before we tried OT.  Ugh.  I'm glad I was warned about the possibility that his behavior could worsen after the 10-day discontinuation and that it wouldn't improve until he had been back on it for over a week.

He has been living with an unlocked kitchen and lax (if any) supervision in our home since May, 2017. Since his eating behaviors (calories ingested, food choices made, frequency and intensity of appetite) can only be observed episodically by us and by his (unreliable) self-reports, his eating behaviors cannot be accurately measured.  Therefore, the only hard evidence I can glean is by his weight.  On day 7 of his 10-day OT holiday, he weighed 83.4 kg. Two days ago (10 days after restarting OT), he weighed 82.4 kg and today, Sasha weighs 82.0 kg.  In case anyone wonders if this is "water weight," we know for certain that it isn't because we calculate his weight always based on his weight when his sodium (as measured by a blood test) is at 140, right smack in the middle of the normal range. What makes his recent weight loss even more interesting to me is that he binged on the large quantity of chocolate egg candies just four days ago but he still lost weight! This is definitely the first time in months that he has not only NOT gained weight, but has even lost weight.

I know this is very early in our observations after his 10-day OT holiday and restart but something seems to have shifted. As a result, I am formulating some speculations about the necessity to manage his chronic dosing of oxytocin with drug holidays.  I am also wondering about trying intermittent dosing once his weight plateaus. This very preliminary idea is based on Sasha's weight gain after chronic (one year +) OT administration, these early post-OT holiday observations of Sasha, and my reading of the scientific literature/correspondence with oxytocin researchers from which I have gleaned the following:
1.  Anorexigenic effects of chronic oxytocin administration (done mostly on animal models) of OT can last up to 2-3 weeks after its cessation.
2. Oxytocin receptor binding may reduce as much as 50% after 10 days of administration.
3.  Oxytocin is much more effective for weight loss on obese individuals than normal-weight individuals.
4.  Anecdotal evidence has shown PWS kids in Europe who have benefited from long term, intermittent use of OT.

I believe the combination of the above findings theoretically suggest a good reason to try him on intermittent dosing when his weight stabilizes at a (hopefully) healthy BMI.  I don't want to put the cart before the horse just yet since he still has some weight to lose but I am definitely intrigued by this idea. There is definitely a need to conduct more studies on dosing of OT, and especially on chronic dosing (if it is going to be used therapeutically in patients). In the meantime and since these studies are yet to exist, our experiment persists.

107) Experiment continues with possible receptor desensitization and drug holiday

The case report on Sasha has been published in the print version of the JCEM for over a month and so far, a few people have been successful in getting their endos to prescribe it.  I have had three physicians/researchers from Europe (England, Italy and France) contact me and know of families in Canada, Finland, and New Zealand obtain OT since the paper has come out.  I am hopeful that more people will have the opportunity to try it for hypothalamic obesity and that future dosing studies will enlighten us on the best treatment protocols.  Until then, all of us are our own guinea pigs, navigating through unchartered waters.

Sasha is doing well overall. We have now had 6.5 years post tumor resection with our "new normal" and we've had about 18 months of using OT. We feel grateful that the he is medically stable (with high maintenance). His food drive is calm and mellow, he is doing well in school, has started a couple of new hobbies (electric guitar in a band and computer coding), and is rather content (maybe even happier than the average 15 year old boy?) in his life despite his many chronic medical conditions. Sure, there are still challenges (this goes without saying for those of us who are now "surviving surviving") but I feel the need to remind myself that Life is precarious and messy and that non-eventful/ordinary days are to be appreciated.  In the past, my husband would text me on a daily basis, "any disasters today?" and we would  celebrate these "non-disaster" days if we didn't get the dreaded phone call from school personnel on a given day... we'd rejoice if we didn't get any reports of his stealing food or getting into a power struggle at school over food. We continue with our unlocked kitchen and our relaxed attitude about food (no more policing) and it is indeed a relief since now he makes the entire family's lunches and helps with making breakfast and dinner while we stay out of the kitchen and let him do his thing.

After the completion of the case report, I relaxed a bit with my careful data collection of his weight and height.  We still keep track of his weight for the purposes of estimating his water needs for his adipisic (thirstless) diabetes insipidus and I noticed that he has been creeping up in his BMI.  It is not terribly noticeable on his appearance since he takes after his father's tall and muscular frame and since he is likely going through puberty changes into a man's body (he now weighs 183 pounds/83 kg and is 6 feet/183 cm tall). Of course, there are always other mitigating factors- we have also lowered his GH to an adult maintenance dose (from 2.0 mg/day down to 0.8 mg/day) so this will probably also increase his BMI. 

 I have been privy to read an accepted (to be published in the next couple of months) manuscript of a review article on OT's effects on feeding behaviors and it raised the question of OT's efficacy with chronic administration. With chronic administration of OT and the possibility of tolerance, I was advised that it might be a good idea to give Sasha a "drug holiday" from OT for 1-2 weeks, every 4-6 months.  Apparently, doing so may allow the OT to resume effectiveness and possibly even at a lower dose. Sasha has been on OT at 6 iu/day for the past 18 months so perhaps this was a needed step to let his oxytocin receptors "rest."

 Last week, we paused his OT and plan to restart it tomorrow (totaling a 10-day break).  Interestingly, we did not notice any changes to his moderate appetite or food drive and even trusted him to attend his first high school dance on his own last weekend (and we even knew there would be desserts served!)- call it crazy, parental letting go, or trust- we did it and he came home reporting that it was a success- he said he had a lot of fun dancing and ate only one cookie!

Although we detect no change after taking this drug holiday, we will take it slowly and restart the OT and the tracking of his weight again.  Our hope is that after the 10-day respite, the OT will keep his BMI stable.

Here's a picture of him taken today (serving the breakfast he made):

106) Updates and summary on dosing experiences

The online publication of the case report has been out for a little over a month and I've been receiving a trickling of queries from a few people who have inquired into our dosing, side effects, etc.  The medical community continues to be cautious about prescribing oxytocin; however, from the comments from some individuals, there have been a few physicians so far who have shown some interest. The report stands on its own but for the sake of answering some of the common questions, I will summarize my answers here. Before I do that, please note my disclaimer:

I am NOT a physician and I am NOT an oxytocin expert and I am NOT intending to prescribe an oxytocin dose for any patient.  I am intending to simply describe what we have done and what we have learned from our experiences with oxytocin. For peer-reviewed research on oxytocin (though there is a dearth of info on dosing), please see post #8.

1.  What OT dose was effective, how soon was it effective after you started OT, and how do you know it was effective?
We were advised to start with a low dose based on anecdotal data derived from some European PWS kids who saw anxiety and hunger-reducing effects on low doses of OT given on an intermittent basis.  We gave 6 iu every three days and it appeared to lower his food drive.  I have to say it "appeared" to lower his food drive because I don't know for a fact if he was sneaking extra food on the side and not being truthful when he exhibited reduction in his appetite.  There was, in fact, a brief period of time in July, 2016 (before trying the daily OT dose) during which we discovered he was sneaking out of the house at 4 AM and stealing/buying large amounts of chocolate from the 24-hour grocery store.  At this time, he was getting the every-three day dose.  In my case report, I ascertained OT effectiveness by his weight loss since it is a measurable observation.  If we use weight loss as the evidence of therapeutic effect,  his steady weight loss was noticed immediately after we started the daily 6 iu dose. Because we were experimenting, it took a total of 3.5 months after starting OT (at various doses) before we found the "just right" dose of 6 iu/day.

For the reduction in his hyperphagia, it was a more gradual process which involved an exposure hierarchy- we gave him food freedom in a baby-step way (partial snack cabinet increased to full kitchen access over a period of weeks).  I believe that people with HO hyperphagia are in survival mode and learn to use whatever means they can muster to survive (not starve).  This includes lying, sneaking, stealing, and hoarding food.  The end of homeostatic hunger does not suddenly end the survival behaviors and anxiety about not having enough to eat.  Hence, we did not truly let go of our intense food monitoring and locking until seven months after we started to notice the weight loss effects and the beginning of Sasha's ability to appear more relaxed around having enough to eat.

3. Did he have any side effects to OT?
OT, like vasopressin, has antidiuretic effects, and has the potential to cause fluid retention.  We actually welcomed this because my son has adipsia and is required to take a very large dose of desmopressin (0.2 mg x 18-20 pills per day) for his diabetes insipidus.  My son's desmopressin dose, however, was NOT decreased as a result of starting OT. We did experience some increased irritability and food seeking when we increased his OT dose to 9 iu.  Although it isn't possible to conclude that the higher dose caused these adverse effects, we lowered the dose and felt that it reduced these symptoms.

4.  Why did you add naltrexone? How effective was it?
We added naltrexone after Sasha found and ate all of his sister's Halloween candy.  I read up on the opiate antagonist's effects to deter cravings in alcoholics and opiate addicts and in some "food addicts" (binge eaters). Post #8 lists some research papers on naltrexone and Contrave, the weight loss medicine that is a combo of buproprion and naltrexone.  In sum, I don't believe naltrexone did what I hoped it would do- to deter his cravings for sweets- alas, if it could do that, wouldn't we have already cured obesity??  The biological theory for naltrexone's failure to decrease sweet cravings in Sasha is described in the discussion section of the case report as being due to his broken HPA- axis/panhypopituitarism (this is an explanation in a nutshell- please read the paper if you want more nitty-gritty neuroendocrine details).  However, I did learn that opiate antagonists like naltrexone DO act to potentiate OT's effects so perhaps naltrexone is helping boost OT's effects on his homeostatic hunger and energy balance??  All in all, I believe that naltrexone is an adjuctive treatment to OT which is why we put him back on it (100 mg/day) after taking him off it for several weeks.

5.  Were there other positive effects besides the ones affecting his weight and appetite?
Yes, I believe that Sasha improved in increasing his social motivation.  Before OT, he had absolutely no interest in having peer-friends.  He liked talking with adults but really didn't have any friends his age and didn't seem upset about his lack of friends either.  Since taking OT, he has made a friend on his own and expresses more interest in having friends his age.

By the way, Sasha continues to be doing well. He is now 183 cm (6 feet) tall and weighs 77 kg (170 pounds).  He just turned 15 on January 1st!

Please don't hesitate to contact me if I haven't answered your questions and if you or your physician have other questions about our experience.

105) Coming full circle: Hope for HO case report has posted to JCEM

For the last couple of years, I've been finding and posting research papers to this blog and to the various FB groups to learn and to share information that I hoped would be helpful to my son and others with his condition...

Now I am delighted to share the fruits of my labor! This online article is in its entirety.

https://academic.oup.com/jcem/article/103/2/370/4693940

The final version has been printed in the Journal of Clinical Endocrinology & Metabolism in the February, 2018 edition.

You are welcome to share the article with whomever you please. If you think you might have a comment or question that would interest others, please write it under the comments section of Hope for HO. Otherwise, I am the corresponding author and my email is listed if there are questions.

104) Actualizing more hope for HO!

Woo hoo!

After two years of slogging through endocrinology journals on oxytocin, metabolism, neurophysiology of the endocrine system, obesity, (etc.), almost a year and a half of writing in this blog on our experimental treatment of my son's hypothalamic obesity, and another four months writing and re-writing the manuscript... I'm thrilled to report that the Journal of Clinical Endocrinology and Metabolism has accepted "Oxytocin and Naltrexone successfully treat hypothalamic obesity in a boy post-craniopharyngioma resection."

The decision to conduct the experiment with oxytocin was motivated by pure desperation to escape the hellish life my son was living and would live, indefinitely, if we could not find a solution.  However, the blog and desire to publish a report in a reputable medical journal has been a labor of love and one that has been propelled by the great relief we have felt after suffering for five years with HO and hyperphagia.  To those of you who have followed the blog or who also live through the daily horrors of HO, you know the indignities that are associated with living with this disorder; the day we experienced the "HEFY" (half-eaten frozen yogurt, post #4) will always live in my mind as the moment I first felt hope for HO.

The experiment and case report would have not been possible had it not been for several key people who deserve special shout outs:

From the craniopharyngioma FB group- Martin H. opened my eyes to the fact that not all pituitary hormones are readily replaced in patients with PHP and Naomi C's pioneering work with oxytocin gave me the idea to try it in the first place. Dr. Theodore Friedman prescribed this difficult-to-obtain neurohormone and Dr. Jennifer Miller kindly provided her oxytocin expertise as a consultant to the experiment. While I pored through relevant PubMed papers, I contacted some of the scientists who authored the papers on oxytocin and hypothalamic obesity; some of them kindly returned my emails with helpful articles, answers to my questions, and moral support for my project. One of them was Dr. Christian Roth who took notice of our success with Sasha's weight loss and offered to have his MRI scans evaluated for hypothalamic damage and risk for hypothalamic obesity. He joined the project to help get the manuscript ready to submit for publication and asked Dr. Francisco Perez of U of Washington (neuro-radiologist) to assist with the MRI scan analysis. With the support from my co-authors (Drs. Miller, Perez, and Roth), I somehow wrote this case report and now it will be published...

I will let you all know when the advance article becomes available (posted to the JCEM website in about a week) and when the final paper is published.

Have hope for HO!