102) Manuscript is still in the running (!); before OT and after OT photos

I've been away from the blog lately due to my work on the manuscript that I'm trying to publish in a highly reputable medical journal.  The first rendition of the manuscript was peer-reviewed with only minor concerns but was rejected due to its "low priority" ratings (due to its orphan disease status?). However, at the urging of my scientist husband, I made a strong case for reconsideration and the editors are now allowing us to resubmit a revised version in response to the reviewers' concerns . Apparently, it is not typical for the editors to reverse their decisions so I am cautiously optimistic about our ability to rewrite the paper so as to impress the reviewers/editors enough to reconsider publishing the paper.

I'm done revising the paper and am now waiting for my co-authors to look over my revisions.  In the meantime, we are continuing to cruise along.  Sasha continues to take a 6 iu/day OT spray and has been off naltrexone now for 14 weeks. His weight has stayed more or less the same (weight has increased slightly from the end of July- BMI was at its all time low then in the 79th percentile- now it is in the 81st percentile). Here are some photos (sorry for the photo-edited decapitation) of before and after OT:

Sasha before OT (July, 2016) with 
5 years of tight food supervision and locked kitchen

170 cm tall, 77 kg, BMI=96%

Sasha today after 62 weeks of OT with 24 weeks 
of loose supervision and unlocked kitchen access
180.3 cm tall, 73.1 kg, BMI=81%

His eating habits have remained moderate and he is able to exercise control over himself with our greatly reduced supervision and unlocked kitchen (now unlocked a total of 24 weeks)!  We have had very good reports from school regarding his food seeking behaviors- in fact, we weren't getting any reports (no news is good news) so we inquired and they reassured us that they were keeping close tabs on him and that they would report incidents if they had any to report.

When I re-read and think back to our lives before OT, I shudder with horror at the hell we had to live through for 5 long years.  The constant, unblinking vigilance, rapid weight gain, food obsession, kitchen locking, tearful episodes over food, food stealing, etc.  It was truly the bane of our existence. I know that many of you who read the blog are currently living through this hell.  It is my hope that the eventual publication of our report will enlighten more researchers and physicians to consider oxytocin as a viable treatment option for HO and hyperphagia so others can also find the relief that we have found.

I promise to work as hard as I possible can to get this case report accepted for publication and will update the blog when I get some (good) news.  Keep your fingers crossed!

101) Experiment is over...what's next?

Hello!  It's been a long while since I've blogged here.  During this absence, I've been writing the case report and getting it ready for publication in a clinical endocrinology journal.  I submitted it last week and it is now "under review."  We are crossing our fingers and I hope to share some good news with you all if it gets selected for publication.

Now that Sasha has been on a therapeutic dose of oxytocin for over a year, I believe I can conclude that it has been a successful experiment.  My original treatment goals were to decrease his hyperphagia in order to normalize his relationship with food and to improve his socialization (increase social motivation and friendships). Our lives now are vastly improved compared to the old days of living with the stress and dread about keeping all food under lock and key, limiting access to social events, and having to keep an unblinking eye on him when he was around food. Sasha's steady and sustained improvements have allowed us to loosen up on his supervision and now he walks to and from school by himself.  So far, we have not detected any signs of food sneaking.  He still has an aide at school and they do keep a close eye on him (part of his IEP) just in case his food sneaking returns, but so far, no reports from the school about any "disasters"- we are happy and relieved about this! As for the goals regarding socialization, he has kept up with his friendship with his buddy and they continue to see each other on the weekends.  He has also begun to join some social clubs at his high school (robotics, Best Buddies, card and board games, etc.) so we are hopeful he will be able to make some new friends at school.

His dose has been steady at 6 iu/day intranasal oxytocin and we haven't missed the naltrexone (stopped before the end of July) to date.  At home, he's been observed to have the same eating habits and we still keep to a low-ish carbohydrate diet (100 grams of carbs/day, give or take). I have been even more lax about supervising his food and eating since the beginning of school.  In fact, I have not once supervised or even seen what he is packing in his school lunch.  We keep the kitchen stocked with healthy foods that Sasha enjoys and he appears to be handling his free access to the kitchen without a problem; the fridge and all cabinets remain unlocked 24 hours a day and the Kitchen Bitch hasn't been around...! I am trusting that he is making good choices about his food selection and eating in moderation. We do indulge, on occasion (3-4 times per month), in a sweet treat and so far, it has not led to any problems.  Lastly, if his physical appearance is any indication of his choices, he's doing a good job because he looks and feels great at 5'10.5" and 160 pounds (179 cm, 72.5 kg).

Regarding oxytocin's social bonding function, last Saturday I had the great privilege to meet and spend the afternoon with Dr. Sue Carter.  She is the scientist who discovered the bonding properties of oxytocin in her seminal work on socially monogamous prairie voles and is currently the director of the Kinsey Institute. Sharing a couple of articles about her work- the first is written by her and her husband, Stephen Porges (another internationally celebrated scientist, widely known for his Polyvagal Theory). The second is an article and interview written by their son, Seth Porges, journalist. The third paper explains oxytocin's role in the evolution of human behavior.
1. The biochemistry of love: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3537144/
2. Seven things you didn't know about oxytocin: https://www.forbes.com/sites/sethporges/2016/02/12/7-things-you-probably-didnt-know-about-oxytocin-and-the-science-of-love/#bd37080670b3
3. Oxytocin Pathways and the Evolution of Human Behavior: http://ccare.stanford.edu/wp-content/uploads/2013/09/Oxytocin-Pathways-and-the-Evolution-of-Human-Behavior.pdf

Dr. Carter has shown interest in our experiment and has been very supportive to me over the last year so it was a great honor to finally meet her.  Talking with her has inspired me to continue to learn more about oxytocin and to understand other untreated conditions (social impairment, compulsive behaviors, anxiety, etc.) that may be connected to the impaired oxytocinergic system of people with pituitary/hypothalamic tumors.  I am very excited about a research study that is launching from Stanford University on this subject and will post more info about it after I gain permission from the principal investigator.

100) Back from family camp: being Mrs. Gloop

We had a very nice week-long trip at our favorite summer family camp destination where we participated in many musical and other performance arts activities.  I played Mrs. Gloop in the Willy Wonka and the Chocolate Factory musical production.  Unlike Kitchen Bitch, Mrs. Gloop loves to indulge her son, Augustus (whom I'm certain has hypothalamic obesity and hyperphagia!), in all the treats he can muster to eat.  I sang a solo with Augustus to celebrate his gluttony (sung with an exaggerated German accent):

MRS. GLOOP:

Ve give him...

Fruit juice for breakfast

Plus melons und mangos

Und cereals, bananas, and cream!

AUGUSTUS:

Zen fried eggs mit bacon

Tomahtoes und mushrooms

Mit bread rolls und buns by ze ream!

BOTH:

Und coffee und toast

Spread mit butter und marmalahd

Sweetmeats und neat treats galore!

MRS. GLOOP:
Und vat does Augustus do ven breakfast's through?

AUGUSTUS:
I eat more, I eat more, I eat more I eat more, I eat more!

Well, we had a great time performing the musical and of course I could not help smirking at the irony of my role in the play.  While I did not behave exactly like Mrs. Gloop towards Sasha, we also made a conscious decision to resist policing him during the week.

The spread of food was abundant and it was always hellish to police Sasha in the pre-oxytocin days:  food is served buffet-style.  Although the food is delicious and well-prepared with healthy options (an amazing salad bar every meal, for example), there are also an array of "carbolicious" foods at every meal (breakfast cereals, breads, pasta, pizza, rice, some desserts, etc.) in addition to there being bread, butter, peanut butter, and jelly available all through the day until midnight.  In the past, we used to check up on him whenever we could during and between classes but it was impossible unless we were with him in every class (which we weren't).  This was the first year going to camp since having him on the therapeutic dose of oxytocin so we decided to just let go...

Well, he definitely took full advantage of his food freedom and chowed down pretty well on the high carb foods and on the peanut butter sandwiches between every meal.  We did our best to just let him make his own decisions about food choices and to resist the urge to control him. As a result, he ended up gaining 3 kilos (7 pounds) during the week!  I am not surprised about his desires to indulge himself since we do not stock these types of foods at home.  I am also not surprised that he gained all the weight that he did during the week of excessive carbohydrate consumption.  He was not the only one who gained; the rest of us also put on some extra pounds, thanks to the buffet-style meals. Fortunately, it has been very easy to resume our lower carb (50- 100 g/day) lifestyle back at home. As expected, Sasha has returned right back to his home eating habits and is losing weight (over one kilo lost in last five days) rapidly once again. At his endo appointment yesterday, his doctor was very impressed with his weight loss (BMI at 22.5) and she saw him with his net weight gain after returning home from vacation.

I have learned that Sasha can and will behave somewhat like Augustus if given the opportunity. Oxytocin is not a magic weight loss drug. If one eats like Augustus Gloop, one will gain weight (yes, even with oxytocin). Fortunately, our all-you-can-eat vacation lasted only one week and resuming our moderate eating and lower carb lifestyle (with help from oxytocin) makes it possible to lose the weight he gained.

We have one last vacation to Seattle before Sasha starts high school (gulp). In Seattle, we will do some sight seeing, visit friends, and I plan to meet up with pedi-endo and HO expert (co-author) Dr. Christian Roth at the University of Washington, to discuss and hopefully wrap up the editing of the OT/Naltrexone case report I plan to submit for publication soon.

99) Off Naltrexone, behavior and weight are holding steady

Sasha has been off naltrexone (100 mg/day) for about two weeks now.  So far, we haven't seen much of a difference- there were a couple of incidents of more "food intensity" (increased insistence about being in control of food, displays of unhappiness when not getting his own way around food) last week but it may have been because we were more sensitive to changes.  Fortunately, there were no signs of extra food sneaking/stealing. His weight has remained exactly the same as it was last week so this is reassuring that the therapeutic effect (re: energy metabolism) of the experiment is remaining intact even with the removal of naltrexone. We have been a little more generous with carbohydrates.  He has had some legumes, oatmeal, Chap Jae (Korean glass noodles), and once last week, we even went out for dessert and permitted Sasha to order a bread pudding dessert (modest sized piece but made of sugar and butter and flour).  After the sugary dessert, we went back to our regular lower carb eating and it did not seem to trigger any ill effects such as increased carb seeking.

An article about how chronic consumption of sugar blunts activity of pathways that mediate satiety.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3175817/

I'm hoping that this implies that non-chronic consumption (an occasional once-a-week treat, perhaps?) may be less risky for the mediation of satiety. If we can keep this balancing act, I will be very pleased indeed!

Tomorrow we are heading to a week-long vacation at our favorite performing arts family camp. They serve excellent tasty and healthy food but there is always the spread of cereals in the mornings and the peanut butter and jelly sandwich bar that is there between meal times. We will be performing Willy Wonka and the Chocolate Factory (musical based on book by Roald Dahl) and I have been cast as Mrs. Gloop! The irony has not been lost on me. I only hope that Sasha does not behave like Augustus Gloop at camp...

98) Sasha is shedding kilos/pounds: finding the lifestyle with the optimal "balance"

Well, this is funny.  Never in my life would I have predicted that I would ever be concerned that my kid with hypothalamic obesity and hyperphagia would lose so much weight that I would start to become worried he was "wasting away."  No, he is not really wasting away but he has continued to lose weight steadily, 4 kilos or 9 pounds in 6 weeks. We even went to the Southern California Craniopharyngioma Picnic last weekend and purposely gave him more freedom to eat at his own discretion and he definitely took advantage of the picnic potluck to enjoy the higher carb goodies like eggrolls, crackers, and cookies there.  Still, he lost two pounds (one kilo) in the last week!

For the sole purpose of breaking the sugar addiction cycle, we implemented the very strict ketogenic low carb diet for 10 days, after which we re-introduced fruit, legumes, and modest grains (oatmeal) back into his diet. We don't count calories and we leave the kitchen unlocked. We haven't been trying at all to reduce his weight so to my surprise, he has continued to lose weight even after we added back the complex carbs. Because we don't want him to keep losing weight, we will be adding even more carbs back into his diet. We don't want to start any extreme carb cravings (which could cause more intense food seeking/carb addiction) by doing this but we would like to ease up on our rigidity and give him a sense of normalcy. Heck, I badly need a sense of normalcy in the midst of our lives so limited by the constraints of his many medical conditions and treatments. Even if he does gain some weight from these extra carbs, his leaner body can now afford the extra pounds.   We really, REALLY want to find the "happy medium" (if it exists) to keep him at a healthy weight, keep carb cravings at bay, AND allow him the enjoyment of a moderate amount of higher carb treats to decrease his sense of deprivation and increase his sense of normalcy.

I am certain that the lower carb diet alone is not responsible for Sasha's weight loss. Starting in February of 2015, Sasha began and was maintained on a rather strict lower carb diet (Under 80 grams of carbs per day). During these 18 months, he managed to lower his BMI from the 96th down to (the lowest ever since brain surgery) the 93rd percentile.  By the time we found a therapeutic dose of OT, his BMI had crept back up to the 96th percentile.  In the last 12 months on OT (9 months on OT and naltrexone), his BMI has fallen 17 percentile points and today his BMI is only 22.1 and in the 79th percentile.  Testosterone was added in December of 2016 (right before his 14th birthday) and it may also be an additional boost to a leaner build with improved muscle tone.

Because I have been disappointed in naltrexone's failure to curb his hedonic food and non-food seeking, I am discontinuing the naltrexone to see if it makes any difference at all in Sasha's appetite, eating habits, food seeking, non-food seeking, weight, etc.  This is the first week he has gone without naltrexone and we've not noticed any difference.  It will be a matter of time before we know whether OT alone is the primary agent responsible for Sasha's improvements.  Stay tuned.

97) The perils of special needs parenting

This is a post about me.  And if you are also a special needs parent, this is about you, too.

I started this experiment out of pure desperation to find relief from our suffering.  I knew that others in our position were also suffering and I wanted nothing more than to try to end the suffering for my son, myself and others who have been tortured by the beast we call HO Monster.  Due to my desperation and drive to find treatment for my son's hypothalamic obesity and hyperphagia, I started this Oxytocin experiment and have found some relief with our experiment so far.

We've made progress and I can celebrate our successes... but it has come at a large cost.  Some parents and blog readers have called me "tireless" in my efforts.  To the contrary, it is extremely tiring (understatement of the year) but I feel that I am a machine and I CANNOT stop trying to "change the things I cannot accept."  I work full time as a clinical psychologist and I have a marriage and another child (Sasha's younger sister).  I used to say that I "go to work to relax" when the kids were very young but the statement has never been more true than after my son was diagnosed with the brain tumor and I truly had a much easier job when I went to work to treat patients with acute and chronic mental illnesses, personality disorders, suicidal crises, etc. It strikes me as ironic that I find myself in the role of counseling others when I am certain that my stress is often as severe or worse than that of my patients.

I was recently hit with the stark realization that my best efforts may not result in my desired outcome.  Although we have found freedom from many of the horrors of HO (constant hunger and food obsession, health problems related to obesity), we have not yet been able to free him from having to live within the confines of the extremely limited and restrictive lifestyle (with a low carb regimen in a high carb world) where HO Monster still looms. This realization has hit me hard, so hard, it has stopped me in my tracks.  In the space of this stillness, I have sunk into a deep sadness and grief for the loss of his pre-brain tumor past, and great anguish and worry for his post-brain tumor future. Although my feelings are totally legitimate, I cannot afford to wallow in the grief and worry. I have too many f-ing things to do to keep my son alive and optimally well. So I put on my hat of strength, competence, and stoicism and I carry on. And while I often feel that I cannot keep up with this frantic pace of life, I also cannot afford not to keep up this frantic pace of life.  Sometimes I marvel at the fact that I have not (yet) become debilitated by a severe anxiety disorder or clinical depression given the amount of stress we have endured in the last 6 years- I honestly believe it is simply because I don't have time to become depressed. If I had to diagnose myself with a psychological condition, I'd have to say that Post Traumatic Stress Disorder may be most fitting ( and it happens to be my professional specialty).  However, I feel that the trauma that I experience is not merely from the past; it is an enduring daily experience of dealing with anticipated "disasters" (health and behavioral)  that are intimately related with his brain tumor.  The DSM-V needs to come up with a more fitting diagnosis for those of us who are special-needs parents and I propose that it be called ETSD or "Enduring Traumatic  Stress Disorder."

Sometimes exhaustion, bedtime, and sleep are my only friends.  It is the only time I can escape my sorrow, gnawing uneasiness, and responsibilities of special needs parenting.  Too tired to stay up late reading PubMed endocrine papers I can barely understand, I collapse into my temporary escape of slumber, only to wake up to start the tiresome process all over again the next day.

If you relate to what I've written, feel free to share your comments.  It will surely help us all feel less isolated in this lonely and weary world we call special needs parenting.

96) The ups and downs of the Oxytocin Experiment

There are always ups and downs in life.  Of course, we were hit hard with the downs of life after being violently struck with the diagnosis of craniopharyngioma and its insidious sequelae of diabetes insipidus, adrenal insufficiency, visual impairment, hypothalamic obesity, etc. We have tried to beat back hypothalamic obesity with oxytocin and naltrexone and yet the ups and downs persist like a seesaw.

The "down" (bad news) is that Sasha still has a hard time resisting his urges to find and take highly palatable foods (read: high carb/sugary treats).  I mentioned this opportunistic hedonic food seeking already in post #94.  I maintain that he seeks these types of treats in the absence of hunger because he has no problems eating "non-carbolicious" foods in a moderate way.  All foods in our home are easily treated by Sasha in a totally normal way; he enjoys food and yet he can leave meals unfinished when he is full, he can eat moderate snacks at appropriate times, he can have a mellow attitude around food in general.  In case you might be thinking that the only food we keep in our home is broccoli and kale, think again- although we eat a healthy lower carb lifestyle, we do keep lots of palatable foods around that Sasha likes: peanut butter, almond butter, fresh fruit (peaches hanging on trees and berries dangling on bushes in our backyard!), cheese, nuts, bacon, and homemade treats he makes with coconut flour, almond flour and erythitol.  The only foods he craves and seeks are junky foods like cookies, chocolate, etc.  We'd love to offer him the occasional splurge on high sugar foods but history has shown us that when eats sugar, it creates a vicious cycle of sugar addiction- and this is definitely something we want to avoid!  We are currently working on trying to strike a healthy balance between a healthy low carb lifestyle WITH access to occasional treats and hope that this balance is possible to achieve given his history of "carboholic" tendencies.

The "up" (good news) is that despite his opportunistic food seeking, Sasha continues to lose/maintain his lower weight.  This week, he lost an additional 1 kg/2 pounds from last week.  I never thought I'd ever say this about my kid with hypothalamic obesity, but he is no longer even considered "overweight" since his BMI is now in the 82nd percentile. I really think he is at a very healthy weight and should not lose more weight.  While I am disappointed that he continues to engage in high carb food seeking (an indication of his poor impulse control), I am thrilled that it is done in the absence of hunger and that the OT/NAL has certainly done its job by helping him reduce his problems with excess hunger and poor satiety.

And so it goes... the seesaw effect is alive and well in life and with the oxytocin/naltrexone experiment.  I am working on finishing my manuscript about our experiment and hope to publish it in the medical literature soon so that others may know that the excessive hunger and obesity of HO is most definitely responsive to treatment with oxytocin and naltrexone.