37) "I'm not in the mood to deal with food"- wha???

It's the little things we notice that tell us that things are different on oxytocin. Last night was another first that showed his diminished interest in food...

At school yesterday Sasha ate only about 2/3 of his lunch and brought home the rest (leaving half his salad, some blueberries, pistachios, salami/cheese) and also ate a small dinner (two different salads). Still, he said he was "stuffed". Not finishing all of his food isn't new to us post-oxytocin but what happened next was different: when given the opportunity to make his lunch for the the following day, he said, "I don't feel like dealing with food right now."

For someone who has always insisted on making his lunch whenever the opportunity arose,  it was a remarkable contrast to his normal way. Speaking of normal, it is apparent that I still use his hyperphagic-self as the reference point for "normal" and that I am still thrilled by the changes that we are seeing in him but I can almost anticipate the day when we get to say that his diminished focus on food will be the "new normal" or more accurately, the "new old normal"!

36) Sasha had a "no disasters" weekend, woo hoo!

Thanks to Sasha's history with food seeking and all the trouble it has caused in our lives, my husband and I have a habit of asking each other, "any disasters today?" when we check in with each other at the end of the school/work day.  It is always a welcome relief to learn that there were "no disasters" (no meltdowns about food, no incidents of stealing or lying about stealing food, no reports from teachers about sneaky or suspicious behavior, no fights between HO monster and Kitchen Bitch, etc.).

Well, this entire weekend turned out to be a "disaster-free" weekend!  If you've been following along with the blog, you have probably noticed that I have been writing about some of the successes we've experienced regarding Sasha's weight loss and improvements in his metabolic health.  While that is all good news, what is nearest and dearest to me, however, is my desire for Sasha to have a normal relationship to food and to life, irrespective of his weight.  Recently I have had some conversations and email exchanges that have made me realize that some people may be wondering about my dedication to trying to solve the HO puzzle for my son when he is not even morbidly obese like so many other sufferers of this scourge. In fact, some may even question whether he has Hypothalamic Obesity at all since he is just at the cusp of being "obese" (his current BMI is 25.7 which puts him at the 95% for boys his age).

It seems to me that among HO sufferers, there is also quite a bit of variability along the continuum of weight gain.  On the extreme end, I have certainly heard of cases of some cranios who seem to gain enormous amounts of weight at a rapid and steady pace even when they subsist on celery and eat like birds. Some of these HO sufferers don't feel excessively hungry so it is not necessarily that hard to resist the food but it has got be a horrific life experience and feel so absurdly unfair to gain weight so rapidly when one is eating so little!  Although Sasha has mostly been considered obese (over the 99% in BMI) since his cranio resection, the relentless weight gain has certainly NOT been the case for him. We consulted with pedi-endo Dr. Robert Lustig at UCSF once and he even wondered whether or not Sasha was even a sufferer of HO; after all, he apparently has been capable of keeping his weight relatively stable with lifestyle management (diet and food policing) plus optimizing his thyroid replacement medications (both T4 AND T3).   None of us (including Sasha, for the most part) mind the lower carb diet (save for the restriction on chocolate) but as I have described numerous times throughout this blog, the food policing is a complete bummer, understatement of the decade.

In my conversations with other patients and caregivers of patients with hyperphagia, I am writing about this tonight because I have become aware that some endos have not taken this problem seriously enough and have mostly paid attention to the metabolic issues (i.e. obesity and its associated problems) but not the "behavioral problems."  As I have noted in an earlier blog post, I do not believe in the false dualism of "mental health problem" versus "physical health problem" (especially in the world of endocrinology) and I feel very strongly that categorizing hyperphagic symptomatology (caused by a damaged hypothalamus) as merely a "behavioral problem" or punting these symptom over to psychiatry to attempt to solve is shortsighted at best, and medically irresponsible, at worst.

Whether Sasha is a bona fide sufferer of HO or not (apparently, different endos have differing opinions on the diagnostic criteria), he has certainly suffered (as have we) from his relentless obsession for food which has driven him to distraction and has made him resort to chronic deceit in the way of lying and stealing.  Only those who have hyperphagia or lived with hyperphagic loved one can understand the tortuous enslavement to food- to be chronically hungry and constantly obsessed with the thought of food... Where can I get some more food?  How can I get it?  What will I get?  When can I get it?  According to Sasha, it consumed him mentally and made it hard to think about anything else.  Of course, since his mind was so preoccupied with food, it also made it hard for him to have other interests outside of food.

Well... getting back to his "disaster-free" weekend... we are always grateful for any and all days that Sasha is able to enjoy his life without hyperphagia-related disasters.  Perhaps we can thank oxytocin's therapeutic effect for this weekend: not only was it disaster-free, but he was even able to enjoy TWO social outings this weekend!  The first social event was on Friday night when he joined another boy (the one he met earlier this summer at our home) to play Magic the Gathering cards at a local game store.  He had a great time and reported that he managed himself without giving in to any temptations (dad was there to check on him intermittently).  He very much looks forward to attending the next game event and hopes to find his new friend on the school campus.  Having Sasha show interest in 1) something that is not food-related and 2) wanting to hang out with a peer are both big deals and we are so happy that he may be in the process of making a friend with a boy his age! The second outing was with his friend, M.  M is a friend who has graciously been sharing her dog with our family and today, M and Sasha went out with her three golden doodles for a walk in the afternoon.  As usual, Sasha had a great time with M and her dogs and got plenty of exercise to boot!

Tomorrow is the first day of 8th grade so let's keep our fingers crossed and hope for more "no disaster" days!

35) Sasha passed the glucose tolerance test with flying colors!

Just received word from Sasha's endo that his glucose tolerance test (GTT) was NORMAL!  OMG!  Sasha had been a hyperinsulin secreter in the recent past and during a glucose tolerance test (before oxytocin), his highest glucose levels shot up to 239 from a fasting level of 79.  Two days ago when he took the same test, his fasting level was 92 and after one hour, his level rose only to 108, then down to 100 after two hours and down again to 92 after three hours.  Although his endo neglected (by mistake) to order an insulin test simultaneously to the glucose test, his GTT results shows that his blood sugar levels did not surge abnormally high as it did in the past!  She explained that these results indicate that he is not insulin resistant and although there is no perfect correlation, it may show a lesser likelihood of his having hyperinsulin secretion problems now.

The other notable thing that made me suspect that his insulin secretion problem was different on Wednesday was that he did not crash out from ingesting the 75 grams of sugar drink!  In the past (before oxytocin) whenever Sasha ate anything higher in carbs (such as a slice of pizza, a cookie, a pancake, a piece of candy, etc.), he would become so lethargic, he would become extremely sleepy and be unable to stay awake.  This time, he drank the super sweet drink and had very good energy ALL DAY LONG!

I am pleased that he now seems to be suffering much less from metabolic syndrome that is so typical of people with his brain tumor:

1.  The last lipid panel was (nearly) normal (only needed his HDLs to be 3 points higher)
2.  C-peptide was normal
3.  HgbA1c was normal
4.  Weight is decreasing
5.  GTT was normal

I wish we had his insulin levels tested along with his glucose tolerance test but we don't, darn it!  We will likely repeat the test again in a couple/few months and get both tests next time.  His most recent fasting insulin test (not associated with the test he took two days ago) was slightly elevated at 32 (4-29 is WNL) so I am not sure exactly what this means.  We are all very excited about his test results and I will write more as I learn more about how to interpret these results.

In my search for papers to explain the connection between oxytocin and it's possible impact on insulin and glucose tolerance, I found this article whose summary states, "In conclusion, oxytocin and its analogs have multi-level effects in improving weight control, insulin sensitivity and insulin secretion, and bear potentials for being developed as therapeutic peptides for obesity and diabetes."
Full article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3658979/?report=classic
Another article discusses the significantly lower levels of oxytocin found in obese and DM2 patients compared to patients with normal GTT results: http://www.ncbi.nlm.nih.gov/m/pubmed/25233153/

It appears that oxytocin is influencing his most recent GTT results and that his response to the sugary drink was extremely unusual given his normal response to ingesting carbohydrates.  I will pay attention to see if this pattern continues.  Although we will still keep him on the lower carb food plan, we know he occasionally gets a special higher carb treat so we will observe him to see if he continues to be resistant to the sleepy aftereffects of ingesting a higher carb food or drink!

34) On the new daily dose for 9 days, Sasha loses weight

We just returned from a five-day vacation. We had mixed food security- the main event was a wedding so there was poor food security with two dinner receptions offering up buffet and family- style service party foods- (the groom is half-French so there was a high food bar!). We were able to provide moderate monitoring- we kept an eye on him but didn't keep him at our sides constantly as it was too difficult to do.  We also ate out at every single meal as one typically does on vacation.  Needless to say, it wasn't exactly a week of light eating.  Still, Sasha somehow managed to lose 2 full kilos (about 4.5 pounds!) in 6 days (since his last sodium check).  The last time we went on vacation in London, he lost weight, too (and that was before he started on oxytocin).  Go figure!  Maybe we should write a book on the "vacation diet"... how to lose weight while indulging in eating out in restaurants 3 meals per day,  LOL!

During the last 5-6 days while on vacation, his appetite was moderate.  He definitely ate a healthy amount but didn't appear to "pig out" and was sated after each meal.  He was able to stop eating when full and even passed up certain courses because he was full.  As for food seeking (his biggest liability), it is still difficult to say if it was better or worse or the same as before the dose change.  Because there was no way to enforce food security on vacation (especially while attending wedding banquets), we had to provide the security by keeping a close watch on him.  Because we had to rely on our own labor to enforce the food security (rather than that of a built-in secure system with locked up food, regular meal times, etc.), it took more of an emotional toll on us than what we probably would have experienced being at home with our secured kitchen and predictable eating routines.  For me, personally, I felt that there was less intensity than what we experienced during our family camp trip during which I KNOW his food seeking was intense (before we upped the oxytocin dose).  When I asked my husband, he said that he felt that the food seeking during our most recent trip was still requiring high maintenance but it is unclear to me if he thought that Sasha's intensity was acute or if my husband merely felt a heavier burden of policing him since we were away from home.  I suspect that the higher maintenance of being away from home did put more emotional stress on my husband so I know it needs to be taken into consideration when attaining input on my husband's opinion about Sasha's behaviors.

In any case, the weight is declining and we will continue to use his weight changes as one objective variable to track as we continue with this oxytocin experiment.  Because Sasha does not appear to have the rapid weight gain symptom of HO in the absence of overeating, his weight loss is not our primary goal (his current height is 5'7" and he weighs 164 pounds or 170 cm and 74.5 kilos.) Nevertheless, we welcome the weight loss as one possible sign that he is needing less to eat.

If only we had a more convenient and objective way of measuring his food seeking behaviors!

33) Proceeding with dose change and cautious optimism

We spent one week away at a performing arts family camp. The entire family had a great time and enjoyed the music and drama classes as well as being in the redwoods in Northern California.  We were blessed with the wonderful cooking of the camp chef who prepared delicious and nutritious  meals for us all.   Of course, the lovely food that was provided to us also resulted in the liabilities of  triggering more temptations for Sasha to overeat or sneak extra food.  Sure enough, it was very difficult to manage him around the PB&J sandwich bar that was in the cafeteria at almost all hours of the day.  We did the best we could  to guide and steer Sasha away from the foods that would be unhealthy for him. Still, we are certain he had several chances to sneak in some PB&J sandwiches when we weren't looking and that he probably overate during the week.  Oh well, we probably all ate more than we should have during that week of vacation!

In any case, we knew that the effects of the oxytocin had worn off. Even before we left for our family camp trip, we could see that Sasha was regressing back to his old hungry, food-obsessed self.   We knew we had to do something different so I decided to increase his oxytocin to a six unit daily spray. Since Monday, he has had this daily spray and, knock on wood, it seems to be working.  Now that I  fully aware of the difficulties of assessing Sasha's true appetite, food obsession and food consumption since I am not with him 24 hours a day, I report this news to you with a guarded attitude...

I can say that in the last four days, we have noted a decrease in the amount of food he eats. He has been bringing home food unfinished and he has been leaving food on his plate during meals and even during dessert.  I have searched his room and backpack on several occasions and have found no signs of hidden candy or money (by which to purchase food). I have been in contact with his teachers and camp directors of the week and they have not reported any signs of food seeking or extra candy eating except for only one time when he was seen eating one piece of Starburst candy.  The other positive sign is that I have not experienced my Kitchen Bitch persona of late.  Sasha has been much more mellow around the kitchen and around the topic of food and it has helped me feel much more relaxed when I am around him and food.

Starting tomorrow we will take a 5-day trip to the mountains for some camping. Starting tomorrow and continuing until his first day of school on August 29, we will have 10 continuous days to observe Sasha and his appetite and eating behaviors.  It will give us a good opportunity to truly assess whether or not this new dose is indeed helping him in decreasing his appetite and food seeking.

Wish us luck!!

32) A complicated picture: getting accurate and meaningful outcome measures- weight changes, etc.

I started this blog on July 2 to track and report the changes (if any) of my son's response to oxytocin.  In my excitement of starting the new hormone replacement, I blogged like crazy to keep up with my observations about the experiment and other related thoughts related to the topic of hypothalamic obesity, hormone replacement, and other miscellaneous topics inspired by the experiment.  I have since stumbled into some serious confounding problems when we found that his thyroid hormones were very low and when we discovered that Sasha was engaging in secret chocolate binging.  I have also realized that relying on Sasha's reports on his own observations during the experiment is highly confounded by certain biases and conflicts of interest including (1) his desire to make the experimenter (me, his mother) happy by reporting what he believes is a desirable response (called "social desirability bias") and (2) the agenda of the hyperphagic subject to seek food at all costs including at the cost of honesty. These discoveries have taught me that getting meaningful results of the experiment are highly dependent on keeping certain variables constant and on choosing only reliable data to measure.

 As I wrote in the post on July 25 (#27), my research questions remain the same. In order to answer the research questions, only objectively observed data should be admissible as reliable.  Unfortunately, this makes some of the data are very difficult or inconvenient to measure given the nature of the limitations of our lack of controls in our (home and beyond) "laboratory." 

Objective 1: to see if oxytocin will help reduce Sasha's intense hunger and food obsession and includes these possible data to measure:

• Weight reduction/stabilization (as long as hormone levels and general health status are kept stable and WNL)
• Reduction of food-related tantrums/arguments down from baseline
• Reduction of the mention of food during daily conversations down from baseline
• Reduction of time spent in kitchen cooking/being near food down from baseline
• Delayed time or absence of snack or meal requests down from baseline

Objective 2: to see if oxytocin will help to reduce incidence of food seeking/stealing and includes these possible data to measure:

• Reduction of discovered incidents of food seeking from baseline including reduced home incidence and reduced reports of incidence from teachers,  camp counselors, etc.  Sasha's current environment will ensure food security which includes locked cabinets and fridge, guardian supervision while exposed to food at home/school/camp, intermittent and random searches of room, pockets and backpack, alarmed doors
• Weight reduction/stabilization over time if/when food sources are to be made available by the gradual loosening of food security (this variable will be measured only if and when Sasha is able to demonstrate that his hunger and food obsession are reduced with food security in place)

Objective 3: to see if oxytocin will improve his social motivation and increase his interest in having social interactions/friendships with peers and includes these possible data to measure:

• Increase of Sasha's friendship network with peers as evidenced by his requests for "play dates" with other kids his age from baseline

Some of the variables that can be measured are much more feasible in an ideal world (contained lab setting) but not really very easy or convenient in the real world (our home and beyond). Do I really want to count the number of minutes Sasha spends in the kitchen/with food per day or how many times he brings up the subject of food in conversation or the exact time he requests his snacks on a daily basis? Ugh. I will have to give these variables more consideration in order to select which ones are most optimal to study. Even Sasha's weight, the easiest measurable variable, has its challenges as an outcome measure to help answer Objective #1. Consider these facts as complications to the reasons for his weight gains and losses:

1. Sasha made steady weight gains (half kilo per week) from May 15 until June 18.  Between June 18 and June 25, he lost an entire kilo (this is the week we started noticing the appetite reducing effects of the oxytocin).  
2. Sometime after July 7, Sasha's weight precipitously increased two kilos and July 11, we learned that his thyroid was very low. On July 13, we started him on an increased dose of his T4 and T3. 
3. On July 15, we learned that he had a huge chocolate stash and was probably eating excessive amounts of chocolate. We do not know when the chocolate binging began but we are guessing (based on his precipitous weight gain between July 7 and July 11) that it started sometime in the first week of July.
4. On August 5, we received his lab results that both his T4  and T3 levels have returned to being in the high-normal range and that he has lost 1.2 kilos (2.6 pounds) in one week.

Low thyroid can easily affect one's weight and energy (as can binging on large amounts of chocolate!) so it is not possible to know the exact portion of responsibility the thyroid levels versus the chocolate consumption played in the weight gains and losses.  All I know is that going forward, I will be prudent in ensuring that his thyroid levels are kept at an optimal and constant level in order for us to know if the weight gains/losses can be credited to food consumption or to metabolism efficiency.

I didn't exactly set out to conduct flawless research when I decided to do this experiment but I certainly want it to be meaningful and helpful to my son and others.  In regards to maintaining the rigors of research in my imperfect and error-prone "lab" environment, endocrinological management and experimentation sure keeps me on my toes!

31) Keeping hope alive with upcoming changes and neuroplasticity...

We are continuing with the oxytocin experiment and are biding our time before we make a change of dose.  He has been on the same 6 iu (every three day) dose for close to two months and we think he may need a different dose as the dramatic effects seem to have worn off.  As we approach the two-month marker, we will be making a change to see if it will lead to any improvements with appetite reduction.

In the meantime, tomorrow we will be consulting with several physicians on Sasha's current health status:

In the morning, he will have his annual neurosurgery clinic appointment with specialists representing several disciplines including neurosurgery, neuro-oncology, endocrinology, nutrition, physical therapy, speech therapy, occupational therapy and social work.  At this 3-4 hour appointment, his providers will review his latest MRI and make recommendations about treatment based on his recent labs, their physical examination of him, and our reports on his overall health and functioning.

In the afternoon, we have an appointment with an addiction specialist psychiatrist who will evaluate him for Naltrexone, an opiate antagonist medication.  In following my hunch that Sasha is a sugar/carb addict, I think it may be worth exploring a medication that is used to treat addiction.  This medicine is currently being used to treat alcoholics and opiate addicts.  Interestingly, it is known to have a side effect of reducing appetite and therefore may be helpful to Sasha in reducing the carb seeking by blocking dopamine receptors and reduce the reward experience in eating. Again, if we decide to try this medication, it would be used experimentally since Naltrexone alone is not typically used to treat sugar addiction.

So... we continue our experiment as we keep a hopeful eye on upcoming dosing changes and other possible treatments to supplement our experiment.

Speaking of hope, I recently learned about the work of Canadian psychiatrist Dr. Norman Doidge, who has studied the amazing phenomenon of neuroplasticity, the ability for the brain to change itself in an adaptive manner.  He has written two best selling books, The Brain that Heals Itself and The Brain's Way of Healing which describe many examples of neuroplasticity, the ability for the brain to change its own structure and functioning on its own or with non-invasive and non-pharmacological therapies.

To learn about some of the mysterious and stunning abilities/possibilities of the brain, please watch this very inspiring video on the best that modern neuroscience has to offer.  In this fascinating and informative documentary, Dr. Doidge describes some highlights of the work of neuroscientists who demonstrate neuroplasticity with neurologically damaged people including these stories: a woman regains her balance after acquiring an incurable vestibular disease with the use of a type of accelerometer biofeedback device; a blind man "sees" again through his tongue, stroke victims rehabilitate themselves with a new type of "constrained therapy", children with learning disabilities make dramatic progress in their learning with a computer program, autism is treated with TMS, mental rehearsal alone is shown to change brain physiology/anatomy (which explains why talk therapy works!), phantom limb pain is cured with a sensory trick, and a woman who was born with half a brain lives a functional life.

The documentary video is 51 minutes long but very well worth watching:
https://m.youtube.com/watch?v=bFCOm1P_cQQ&autoplay=1