58) Lifestyle factors: what (meds and foods) does Sasha consume, anyway?

A typical Sasha snack: small bowl of peanuts and sesame seed crackers
Sasha eats a snack twice a day (at 10:30 AM and at 4:30 PM)

Sasha has been losing weight steadily and gradually since we started daily oxytocin (since September 1, he has lost 5.5 kg or 12 pounds). On September 1, his BMI was 27.0 (97%).   His BMI today is 23.7 (89%). Some readers have wondered what other lifestyle factors (besides oxytocin) may be contributing to his weight loss.

To describe his normal lifestyle routine:
Being a person with panhypopituitarism, he has relied upon full hormone replacement and takes many hormones including T4, T3, hydrocortisone, growth hormone, desmopressin, melatonin, and (more recently) oxytocin. Additionally, he takes dextroamphetamine (generic Adderall) to help him stay alert and awake and takes fish oils to keep his lipids under control. We added Naltrexone right after Halloween to see if it could reduce his cravings for sweets. In a week, he will be starting testosterone.

As for exercise, Sasha participates in PE in school and does his best to keep up with the typical non-panhypopit kids in his class.  Outside of school, we take regular walks in the neighborhood (average 3 km a day, a few days per week) and he works out at the gym with his dad on the weekend.

Regarding his food regime, at school he has an IEP for his vision impairment and food seeking problems and is supervised by a full time aide. At home, he is carefully supervised by us in the kitchen and our food is locked up (most of the time with the exception of during exposure sessions a few hours a day). Sasha has been eating about 1900-2000 calories/day of a lower carb/higher fat diet, give (whatever he ends up sneaking on the side) OR take (whatever foods he doesn't finish from his meal) a couple hundred calories here or there.

Everything I described above has stayed consistent over the last four years EXCEPT:
1.  He started oxytocin on May 15, 2016 and began a daily dose of 6 iu at the end of August, 2016.
2.  He has had lighter supervision by us and more exposure and freedom to an unlocked fridge in the last few months.
3.  He has added Naltrexone to his cocktail of medicines at the end of October.

As the "food police", we supervise him to prevent unsavory behavior (shoplifting, middle-of-the-night chocolate candy buying, taking other kids' lunches at school) and to help him control any overeating (by locking snack cabinets) but we are not (and have never) intentionally restricted calories for weight LOSS purposes. Behaviorally, as I've been noting in this blog over the last few months, Sasha has had ups and downs with his appetite and food intensity- on average, his appetite/food intensity has decreased (as evidenced by his ability to leave food on his plate, delay snacks, reduce the frequency of meltdowns related to food) but it has not ceased his food sneaking.  For this reason, it has been difficult for us to really know if his calorie intake has changed over the time he has begun oxytocin/Naltrexone.

To give another "picture is worth 1000 words" description of what he eats, I have photographed a sampling of the types of foods Sasha eats:

Breakfast: Scrambled eggs with kale and cheese,
wheat toast with butter (often we add 1.5 slices of bacon)

Another breakfast: Oatmeal with peanut butter, plain Greek yogurt
with slivered almonds and coconut chips

Dinner: Beef meatballs with cheesy polenta cakes, spinach salad

What he takes for school lunch- packed by Sasha himself:
Cauliflower fried "rice" with mixed vegetables,
salami/cheese, carrots, jicama, peanuts

Weekend lunch: grilled cheese sandwich on wheat toast, baby carrots and hummus
(this lunch is smaller than normal but satisfied him)

We also eat out in restaurants (probably too) frequently, once or twice a week. We try to stick with restaurants that serve Sasha-friendly foods (salads, grilled meats/vegetables, Asian foods minus rice and noodles).  For dessert, Sasha eats his signature Greek yogurt with almonds/coconut chips (pictured above in one of the breakfasts), nuts, or seasonal whole fruit.  Once a week, he gets a sugar free/fat free frozen yogurt with nuts (which he now leaves half-finished, aka the HEFY). On rare and special occasions (holiday, birthday), he gets a special treat and will eat a slice of cake or other type of sugary dessert.

Overall, as his parents, we do the best we can to support a healthy lifestyle for Sasha.  I think he's doing very well considering all of his complex conditions and I think the addition of oxytocin (and perhaps Naltrexone) has definitely improved his metabolic health and aided him in many ways, including this (unintended) weight loss.

P.S.  Other good news: he had a "no-disasters" last week AND Sasha had a classmate from school over at our house yesterday to hang out/play and it went really well! Dare I say that he is making a new friend...?

57) Trees still falling silently (even in Disneyland!)...Does oxytocin diminish the weight-gaining tendency of carbohydrates?

We just came back from three days in Disneyland.  We went there for his sister's dance workshop and performance.  It was a thrill to watch her dance on the Disney stage with other members of her studio and we had a blast.  Of course, being on vacation means eating out every meal which is exactly what we did.  I wanted us to stay on a reasonably healthy meal plan without ruining the vacation spirit. For Americans in vacation mode, we ate relatively-healthy at places that served salads, soups and sandwiches and avoided desserts for the most part.  I tried to guide Sasha to order lower carb items but didn't insist or force his hand when he opted for pancakes for breakfast or French fries with his sandwich (which we normally don't permit at home).

We enjoyed the attractions and rides and he discovered that he likes roller coasters! We also walked quite a bit over the three days (on Saturday we walked 8 miles, almost 13 kilometers).  Although we all had a great time (especially Sasha), I was still aware of his food issues and was tired of his asking me about when we would eat our next snack/meal.  In retrospect, it wasn't really that bad but I think it felt annoying to me because I was with him 24/7 and was the only parent (Dad stayed behind for a work conference) to deal with his issues.  He may have also been a little more anxious about food because we were in a new environment and away from our home routine.

As I reported last time, he has still had some episodes of food intensity and food seeking. In fact, there was a minor incident at Disneyland when our friend, H, told me that she suspected Sasha had snuck his hand into her backpack to eat the remaining third of her cookie!  Apparently, she was trying to discreetly eat a cookie out of her backpack but it is very hard to be sneakier than Sasha when he comes to food so he must have spied her doing it... while we (adults) were standing up in a line, Sasha was seated on the ground near her backpack and snuck the rest of the cookie into his mouth when we weren't looking.  I didn't say anything to him for face-saving reasons and it wasn't really a big deal but I felt disappointed that he would be so daring as to go into a friend's private property to get the cookie.  Although this is minor incident overall, it is a sign that the problem of food seeking/stealing has definitely NOT been solved.

In recent weeks and on this trip, we have seen a continuation of food sneaking. Despite the food seeking, his satiety seems ok since he does have the capacity to stop eating when he is full and can and does feel full after a meal. On this trip, he ate more (permitted) carbs than usual but still had excellent energy in spite of the extra carbs AND he lost weight again!  We have asked his endo to order another glucose tolerance test (GTT) with insulin so we can test to see if he is no longer hyper-secreting insulin.  If this is the case, it means that he tolerates carbs better and if he continues to keep his weight down/stable, perhaps he can start to eat more carbs on a regular basis...

IF this is happens, does it mean that we could mellow out on the carb food policing by allowing him to eat carbs and sweets like a regular person?  Might he be able to control himself (with the help of an increasing dose of Naltrexone) from binging on sweets like he did in July? Could this mean that his food sneaking would no longer be considered "sneaking" because he would be free to eat these carbs? Wouldn't that be marvelous?!

I can dream, can't I?

56) Turning 14 and having a birthday party (with friends!)

Sasha is a New Year's baby and will be turning 14 on January 1st!  He will be starting testosterone in a couple of weeks.  Not sure how I feel about that... but it has to be done, I suppose.  It will get him into puberty and all the stuff that goes along with that!  It will also be yet another hormone added to his large platter of hormones so we'll see how it will affect him...

What I am excited to report is that Sasha will be having a birthday party this year with some kids he hangs out with during school lunch and at the "Magic the Gathering" club, woo hoo!  Since his birthday is on a holiday, we have usually taken the time off to go to Yosemite National Park and celebrated his birthday during our stay in the mountains with family friends. Some years we invited family friends for a gathering or had a birthday party in combination with mine (also in January). Most years, however, we have not had a separate birthday party for him and his friends because truthfully, Sasha did not have a group of friends to invite to a party.  This year will be the first year (ever?) that he will be inviting a couple of kids he has befriended mostly on his own.  One of the kids was introduced by Sasha's dad whom he met in July (L) and the other kid (A) was introduced to Sasha by L at the Magic club. Sasha has gotten to know these kids during the weekly Saturday gatherings where they play their favorite game together. The third kid (R) is part of a family friend of ours who has also enjoyed hanging out and playing games with Sasha when we all get together.  For his birthday, Sasha has chosen to play one of those "can you escape" games where you are "trapped" in a room and have clues to try to figure out how to escape.  It should be fun!

Could Sasha's improved social life be due to oxytocin?  Perhaps- although he doesn't seem to have a close friendship with these kids (yet), I sense that a friendship is developing and it gives me hope that he can and will make some friends this year with the help of oxytocin.

On a more sobering note:  In spite of overall improvement on oxytocin, Sasha has still had some episodes of food seeking  : (  It seems that he is still tempted by certain foods and situations to sneak food and our money when he has the opportunity.  It is not clear how much is prompted by actual hunger versus habit.  We have been slacking from the active exposure work but intend to have him practice resisting his temptations by placing food on the counter and challenging him to leave it alone.  His appetite has not changed, he still eats moderately and his weight is still decreasing/stable. We are also in the midst of raising his Naltrexone to see if that will make a difference in his abilities to resist temptations to sneak.  We will keep the oxytocin at the same 6 iu for now.

55) Photos (before and after) of Sasha- now more svelte!

Sasha "after" on Nov 30, 2016

(I put the sticker on his face to protect his privacy)

Sasha "before" on July 29, 2016

We have maintained the same lifestyle of the lower carb food plan for the last four years but the weight loss seemed to begin after we started the daily dose of oxytocin in September, 2016.
I think his BMI is now lower than mine!  Time to get myself some oxytocin! ; )

54) Gratitude this Thanksgiving

What better time than Thanksgiving to reflect upon the many things for which I am grateful.  We have had six months on oxytocin and we have noticed the changes in Sasha as well as the life style changes we have enjoyed in the last few months.  Reminiscing about the "old days" has made me appreciate how much things have changed for the better!

I'm grateful for peace in the kitchen.

Old days: Whenever I was in the kitchen to prepare a meal, Sasha would insert himself and insist on helping. I knew that his desire to help was fueled by his desire to be near food so that he could sneak it into his mouth or pockets.  When I allowed him to help cook, we would often get into an argument because of the tension I felt with his frequent attempts to sneak food and my attempts to monitor and control him. For this reason, sometimes I just wasn't in the mood to let him cook alongside me or preferred for him to occupy himself with something else he needed to do (homework, for example). Cajoling or asking him nicely to leave was not an option: it was nearly impossible to get him to leave and during these times, I would have to order him to leave. Despite my order, he would refuse to do so and would end up standing at the perimeter of the kitchen, frozen like a statue. It was a very sad sight to see him physically unable to tear himself away from the kitchen even after I ordered him to leave me alone. Overall, I would say that in the old days, Sasha would not be able to stay away from the kitchen if there was food preparation happening and no activity, person, task, request, etc. could compete with the allure of the kitchen, the promised land of food. 

Nowadays: I am able to cook in the kitchen in peace.  Sasha still offers to help me cook from time to time but he is actually capable of staying away from the kitchen now while he is preoccupied with another activity in his room (e.g.: homework, sorting his Magic the Gathering cards). When we cook together now there is much less tension/conflict and much less distrust on my part.  I am much more relaxed and happy in the kitchen and so is Sasha.

I am grateful for more "open borders" in the kitchen.

Old days: All tempting food was locked up at all times,  By tempting food, I mean the food that Sasha would likely eat- (we have never had to lock up canned food or raw ingredients like flour because he wouldn't eat it).  We felt constrained by the constant vigilance around food and could not afford to let down our guard if the food cabinets or fridge were unlocked, even for a minute. In fact, Sasha used to check the kitchen on a regular basis- in the middle of the night when he awoke and whenever he was passing through, just in case someone was sloppy and left out some food or forgot to lock up.

Nowadays: We have continued to keep the snack cabinet locked up because it contains the most tempting foods for Sasha (nuts, his go-to snack these days) and have known that he is still "weak" when it comes to his temptations to sneak them and store them for later consumption (yes, much like a squirrel storing his nuts).  However, I have been noticing that he is much less distracted by the fridge and for the last two days, I have been keeping the fridge unlocked all day long!  To my surprise, Sasha either doesn't notice it (which is a good sign that he is not entering the kitchen to check) or he is not bothered by it.  In fact, even with the fridge unlocked, I have noticed that he continues to go about his business and is able to ignore the kitchen, asking for snacks at appropriate times.  We will keep up the unlocked fridge and keep a sideways eye on him during this prolonged exposure and see how it goes...

I'm grateful for Sasha's improved satiety and ability to self-monitor his food intake.

Old days:  Sasha would eat all of his food and would often express desire for more.  We had strict rules about "no seconds" (except with salad/veggies) so he eventually learned not to ask but it was obvious that he often wanted more. He used to ask for his snack on a more urgent basis and I had the heartbreaking job of often telling him "no" he could not have more to eat because he had already eaten or he needed to wait until the appropriate time to eat.

Nowadays: Sasha self-regulates much more often- feeling full and stopping before he eats everything on his plate.  Now, it is not unusual for him to not finish everything on his plate, even when it is food that he really likes (example- HEFY- Half-Eaten-Frozen-Yogurt).  We have to be careful, of course, to wonder if his satiety is due to extra food he has snuck that day, but we do periodic searches of his room and are finding evidence of snuck food on a much less frequent basis these days.  We ask that his case manager teacher at school give us reports on when he has attempted to sneak or has snuck food.  We used to hear reports on a regular basis (several incidents every week) and now, these reports are much more seldom.  It certainly appears that the decreased intensity of his appetite and his increased satiety are true when we observe his ability to self-monitor and stop eating because he is full.

I'm grateful for stable electrolytes.

Old days: Because Sasha has Diabetes Insipidus with absent thirst, we have relied upon frequent weighings and weekly sodium checks at the lab to monitor his electrolytes.  With stable weight, this is an excellent way to manage this very challenging condition. Whenever he is light (according to the best estimation of his weight with a Na level of 140), we just had him drink water to the desired weight.  Whenever he is heavy, we let him urinate out the excess water and try to keep him at the desired weight.  Every week for the last 5 years, we have checked his sodium and approximately 75-90% of the time, his Na levels were too high.  In other words, we could not accurately calculate his Na levels based on the desired weight from the previous week because he was gaining weight every week (for years).   His high sodium levels caused him to be excessively fatigued and to have headaches/dizziness when his dehydration was more severe.

Nowadays: Sasha's weight has been decreasing or stable.  It is a relief to take him to the lab and to find that his sodium levels are normal!  With the gradual decrease of his weight, we can afford to err on the side of allowing him to be a little lighter than the previous week's weight and still believe that he won't be dehydrated.  In the last 3 months on oxytocin, we have had a record of all sodium results WNL with the exception of one that was too low (when he lost a lot of weight in one week) and one that was too high (when he gained weight after Halloween).  As a result of these stable electrolytes, Sasha's energy has been much better and his quality of life has improved drastically with this increased energy.

There may be other changes I am not noting here but you get the gist.  Life is definitely better post-oxytocin/Naltrexone.  To those of you who are also hoping for an improved quality of life with oxytocin, it is possible with the oxytocin studies underway.  

Last but not least, on my gratitude list are also the people who have supported me in this experiment: Bill (my husband), Dr. Friedman (Sasha's oxytocin-prescribing endo), Dr. Fan (Sasha's regular endo), Dr. Miller (cheerleader and oxytocin consultant), Nurse Naomi (oxytocin pioneer and cranio mum extraordinaire), Dr. King (Sasha's psychotherapist), the other endo researchers who have read and taken an interest in oxytocin as a replacement hormone, and of course, all the readers (you!) who have kept up with the blog and have shared the info with others to spread the word on oxytocin.

Thank you, all.  Have a wonderful Thanksgiving and if you don't celebrate Thanksgiving, have a great Thursday! (as quoted by one of my favorite cranio survivors, Trevor).

53) Demi-anniversary summary and discussion of findings

Today marks the demi-anniversary of the oxytocin experiment.  It's hard to believe it has already been 6 months since we started his first dose.  To mark this occasion, I thought I might review and see if I can make any meaningful conclusions (so far) of this experiment.  Thanks to all of you readers who have been with us on this journey from the beginning. To those of you who began reading this blog more recently, I will summarize the 6 months as succinctly as I can and focus on my findings.

As you may recall, the goals of this experiment were to see if oxytocin might:
1) reduce my son's intense appetite/food obsessions
2) reduce his food seeking behaviors
3) increase his motivation to socialize with his peers and to make some friends

Since I am merely a mom doing an experiment in my make-shift "home laboratory," my findings are unfortunately "mushy" and are due to my lack of pre-test data, the unreliability of the data,  and the lack of controls in this experiment.  Not exactly a water-tight experiment, I know! For what it's worth, this is how I would answer my research questions after these 6 months of using oxytocin on the above three goals.

(1)  Did my son's intense appetite and food obsessions decrease since beginning oxytocin?

Answer: Yes, probably, and much of the time.
Since he has been on (the optimal dose known to us of) oxytocin, he has been able to leave food on his plate whereas before oxytocin, he almost never left food unfinished.  On the other hand, there have also times when his appetite still appeared quite hearty and he finished all of the food he was offered.  I cannot accurately say if the reductions we have seen are "statistically significant" since (a) I did not attempt to measure the number of calories/foods he ingested before and after he started oxytocin and (b) I am not able to accurately measure his appetite and thoughts about food (an internal and private experience that only he can know).  It is also important to note that there have been times we did NOT see any reductions in his appetite and food obsessions because the HO Monster reared his ugly head.  I regret not tracking the frequency of these episodes before and after beginning oxytocin so I can't say with any empirical evidence, alas, but both my husband and I agree that the frequency of his meltdowns over food (what we attribute to his food "intensity" or "obsessiveness") have decreased overall since starting oxytocin.

(2)  Did my son's food seeking behaviors (stealing food, sneaking food) decrease since beginning oxytocin?

Answer: Hard to answer, maybe a little bit, but no, not enough to make a difference.
As you may recall, I have struggled a great deal with Sasha as a unreliable reporter of his experiences in this experiment.  Due to his HO problem, his hunger and desire to acquire food have precluded his ability and willingness to be forthcoming about his food sneaking behaviors.  Very recently, I figured out that our reward system was only incentivizing him to become more adroit at sneaking and lying.  In reality, the only way we know if he sneaks food is when he is caught.  There have only been a handful of times in the last 5 years when he volunteers that he snuck food or admits right away when confronted about sneaking food.  Most of the time, he has had a habit of telling us bold-faced lies about his innocence, even when there was hard evidence to the contrary.  Since our catching him after he sneaks is NOT an accurate way of measuring the true frequency of these behaviors, it is too hard a question to answer.  Additionally, even if we did use "number of times caught" as the variable to measure, we did not track the frequency he was caught before oxytocin versus after oxytocin.  Most importantly, the fact that he was still being caught at all proves to be problematic.  Even if we could estimate that his tendency to steal food would only occur 10% of the time, we still cannot risk leaving him unsupervised in a store or in someone's home for fear that he will take something that does not belong to him.  Shoplifting one time is still one time too many.

(3)  Did my son's motivation to seek out peer social interactions/friendships increase since beginning oxytocin?

Answer: Yes.
Making friends takes time, of course, so I never expected Sasha to suddenly become surrounded by friends just because of oxytocin.  However, he has definitely shown more interest in connecting with peers, thanks to his interest in playing Magic the Gathering cards.  Before oxytocin, his interests were (1) eating food, (2) cooking food, (3) shopping for food, (4) talking about food, etc. Oh yeah, I forgot to include his previous obsessions for collecting (useless, to me) things. Now, he has expanded his interests into a hobby of collecting and playing these cards.  Almost every day at school lunchtime, he hangs with other kids and plays Magic.  On the weekends, he goes over to a kid's house for the "Magic Club" where they play from 3-5 PM for a standing game every Saturday.  We were thrilled for him to be invited to this club- nervous that he might try to take another kid's card and blow his chances at being invited back but so far, so good.  As for our worries about his overeating at the kid's home, we just decided to let go.  The family who hosts knows about Sasha's issues and we know that they serve healthy snacks at their house.  As far as inviting one of these kids to our home, we know he has exchanged phone numbers with a couple of kids at school.  Is he wanting a kid as best friend or appearing to become emotionally attached to a kid?  Well, no, but he's a 13-year-old boy with no previous experience with peer friendship attachments so that would be highly unlikely anyway. For now, we are happy he has something social to do every day at lunch and every Saturday afternoon! We are hoping that it is a matter of time before he invites someone or gets invited by someone to socialize on the weekends.

In addition to examining the results of my three main experimental questions, the *bonus* finding was that oxytocin appears to have improved his metabolism because Sasha has been steadily losing weight.  Before oxytocin, Sasha was steadily gaining weight.  Even in the first three months of using oxytocin (before we started the daily dose of 6 iu), he was still gaining weight and this was in part due to his secret chocolate binging and low thyroid levels.  We have since improved in our home food security and raised his thyroid levels.  At any rate, we are very pleased that oxytocin seems to have improved his metabolism and are impressed that he seems to be losing weight with a BMI (just under 25) at the lowest ever since brain surgery!

In addressing question #1 above, his weight loss may be partly attributed to his decreased appetite and reduction in food intake but... in all honesty, Sasha has been on a low-carbohydrate food plan but was never on a low calorie diet and even when he was not finishing all of his food, he was still eating a moderate amount including high calorie, high fat foods (bacon...yum).  From what I know about losing weight, it is NOT easy to lose weight and much, much harder for those who have HO.  So... I cannot help but think that oxytocin was doing something to speed up his metabolism.  His metabolic health has improved overall and he appears to be less sensitive to insulin crashes after ingesting carbs/sugar compared to before oxytocin.  In December during the holiday break, we will have Sasha get another glucose tolerance test WITH insulin levels to see if he is, in fact, no longer hypersecreting insulin.

Going forward:
As far as dealing with the food sneaking problem, we are trying out Naltrexone to see if it will help Sasha decrease his temptations to food seek.  It is definitely too early to draw any conclusions but I am feeling hopeful based on how he seemed last week.  I am also changing my approach of how we motivate and reward him so I am hoping that my new system (rewarding him for keeping a private daily log on his appetite, temptations, etc.) will be more effective in encouraging him to keep an honest record of his observations.  Additionally, I will be keeping track of my observations with him with my own daily log and we will continue with the exposure hierarchy.

Phew, it's been a lot of work and there's a lot more to do but so far, I still have hope!

52) A meta-examination reveals a major flaw in the experiment- working on fixing the flaw!

The presidential election has been a very divisive and upsetting time for most, if not, all Americans.  During the week leading up to the election, either I've been too distracted by it to pay attention to Sasha's issues, felt his problems pale in comparison to what has been going on in national politics, or Sasha has actually had a better week!  I think all three are true.

We have continued with the 6 iu daily dose of oxytocin.  At my last report, he was still engaging in food sneaking behaviors and we had some meltdowns and tense moments with him which was discouraging and not making me feel safe to do exposure work with him.  We have since added 50 mg of Naltrexone to the mix and it SEEMS that he has had an easier time resisting his temptations. Again, all I can really say is that we have not had any fights between Kitchen Bitch and HO Monster this week and there have been no signs or reported incidents of sneaking/stealing. Due to the difficulty of getting accurate information from Sasha (low accuracy due to his faulty memory and his conflict of interest with admitting the truth), I have grown very weary of trying to determine if his appetite was larger or smaller or if he was having more or fewer cravings and incidents of food sneaking. It was impossible to do with any degree of accuracy without treating our home like a prison and Sasha like a prisoner.  No kid wants to be treated as an imprisoned criminal and no parent wants to feel and act like a prison guard!

Since we have insufficient guidance from research literature about how to manipulate our independent variable (including proper dosage, frequency of dose, interaction effects, etc.) at the VERY least, we need to figure out the dependent variable...what the heck is the effect of the treatment?!  I'm frustrated as I write this because I am realizing that the only accurate information I can glean about treatment effects is his weight whereas I was started this experiment in order to see behavioral changes in him (decreased food seeking). After nearly 6 months on oxytocin (I can't believe it's been 6 months already!), I think I am finally accepting, for real, that it simply doesn't work to get Sasha to turn himself in to the food police (which is what my demand for truth from him really amounts to...)

Instead, we are trying out a new system in which Sasha keeps track of certain variables on a daily basis at a regular interval (we are trying to have him do it before dinner).  I have told him that he is to keep the record private and that it is a journal for him to track level of food intensity (frequency of food thoughts, intensity of hunger), level of appetite, temptations to take things (food and non-food), and whether or not he did take something (food and non-food).  Although I have told him on countless occasions that I am NOT interested in punishing him for any food or non-food sneaking, our reward system contradicted this message.  Up until now, we had been promising him a reward after having a "good week" (a week without evidence of sneaking/stealing).  Of course, if he is still sneaking food, this reward system only motivates him to (1) hone his sneaking skills and (2) become more adept at lying about it.

Duh... how dumb am I?  Why has it taken me this long to realize that our reward system was actually REWARDING him to improve in his abilities to sneak and lie about it!  As his mother, my blind spots (aka my judgment of his behavior and my desperate concern for his future-can I keep him out of jail for theft?) have kept me from seeing a rather obvious mistake in the experiment.  Despite my good intentions to try to glean accurate information from him (does nagging at him for the truth count? LOL), I inadvertently did the opposite.  If we really want him to be honest about his observations of himself, we will need to remove "abstention from sneaking" as a condition for a reward.  Instead, we can reward him for keeping his daily log on his observations, irrespective of its content.  Hopefully, Sasha's daily log (whose content does not result in our reward or punishment) can result in attaining more accurate data and prove useful for the conduction of this experiment.

I'm going to ponder a bit more about this insight and let you know how it goes with the new reward system.  After discussing this insight with Sasha, he readily agreed with me and was enthusiastic about  keeping his private log (to be shared with me only at the end of the week and to be rewarded with a prize irrespective of how many times he reports sneaking behaviors).

As far as the week has gone, according to Sasha, he has had "temptations" to sneak food/non-food but reports that he has found it easier this week to resist his temptations.  His weight (dropping to the lowest it has been since the start of the 6-month long experiment) helps to support his claims. Maybe the addition of Naltrexone is doing something beneficial? If his reports are really true, I sure hope it continues!

51) Craniopharyngioma clinical trials and research updates

I periodically check on research that may pertain to craniopharyngioma and/or hypothalamic obesity and am pleased when I learn about current clinical trials or recently published research.

In case you are interested, here are some actively recruiting studies on craniopharyngioma.

Stanford University is recruiting subjects (ages 6-30) to study social impairments among those with pituitary and hypothalamic tumors/disorders. http://med.stanford.edu/parkerlab/research/Biomarkers-of-Social-Impairments-in-Individuals-with-Hypothalamic-Pituitary-Disorders.html

Children's Hospital of Philadelphia is recruiting craniopharyngioma subjects (ages 10-21) with HO for an oxytocin study.
https://clinicaltrials.gov/ct2/show/NCT02849743

Seattle Children's Hospital is recruiting craniopharyngioma subjects (ages 10-25) with HO for an Exenatide study.  The study is also taking place and recruiting in Minneapolis and Nashville.
https://clinicaltrials.gov/ct2/show/NCT02664441

Klinikum Oldenburg (Germany) is recruiting craniopharyngioma subjects (diagnosed before age 18) to study quality of life following various therapeutic interventions.
https://clinicaltrials.gov/show/NCT01272622

Dr. Hoong Wei-Gan  et al. (London Great Ormond Street Hospital for Children) presented a poster on oxytocin deficiency in hypothalamic obesity at an Endocrine Society conference in April, 2016:
http://abstracts.eurospe.org/hrp/0086/hrp0086P1-P738.htm

Dr. Gan is in the midst of conducting research on oxytocin and vasopressin deficiency among hypothalamic brain tumor survivors with HO and without HO to see if in fact those with HO have significantly lower levels oxytocin and vasopressin than those without HO.  Finding a significant deficiency of oxytocin in the cohorts with HO would certainly suggest replacing the hormone in hypothalamic brain tumor survivors with HO. I am unable to find any indication of active recruitment so I assume his study is underway and closed for recruitment at the moment.

Dr. Elizabeth Lawson is the PI for an oxytocin trial for (non-cranio, BMI=30 to 50) obese adults at Massachusetts General Hospital: https://clinicaltrials.gov/ct2/show/NCT03043053

And last but not least, here is a very important and rare paper (abstract only) on craniopharyngioma and oxytocin, hot off the presses, published in September, 2016:
https://www.ncbi.nlm.nih.gov/pubmed/27585663

50) Post-Halloween post-mortem

Well, as I predicted, there would be fallout from Halloween.  Halloween itself was manageable.  I escorted Sasha as he went trick-or-treating in the neighborhood in his homemade Jelly Belly costume (if you can't beat 'em, be 'em).  He had a fun time showing off his costume and getting a moderate amount of candy. As planned, he ate a few pieces and then selected about a dozen pieces for safe keeping.  His dad removed the rest of it and hid it elsewhere in the house. His sister also trick-or-treated with her friends and brought home her candy.  Unlike Sasha, she didn't select her candy but kept the entire stash for sorting on another day.  We never got around to sorting her candy and ended up keeping the whole bag (60 pieces or so) locked in one of the kitchen cabinets.

Today his sister looked into her Halloween stash and was dismayed to find that it had greatly shrunk!  Only a few days ago, she had 60 pieces and tonight, there were only 5 or 6 pieces left!  We all thought it was their dad who ate the candy but it turns out it was someone else...

Cut to earlier today:

I was proud of Sasha this afternoon when he told me that he was feeling tempted by the candy that was brought in by kids at school to donate to a charity that collects candy for disadvantaged youth (yeah, soon to be even more disadvantaged by diabetes mellitus and rotting teeth!).  Sasha told me that a huge bowl of candy sat on the counter of the school office that beckoned to him and drove him to distraction whenever he was near or in the office.  He decided that he wanted to talk with his IEP case manager to move the candy out of sight so as not to continue to tempt him.  Fighting back tears, he told me that he did not want the candy there to tempt him and to possibly get him into trouble.    He told me that he felt really good about his honesty with himself and that he could admit he needed support to cope with the candy temptations.

Needless to say, I was glad to have him voluntarily bring up his struggle as it demonstrated his maturity and his awareness of his powerlessness over the candy temptation.  I have always been a huge proponent of the wise saying called the Serenity Prayer:  "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."  To me, having Sasha admit that he was powerless over the candy's lure gave him the permission to ask for help to have it removed from his line of sight.  

Bravo, Sasha.

Now, back to tonight to our discovery that his sister's candy was largely gone... after she told us that the candy was missing, we glibly blamed their dad (he is also a chocoholic!) and said that we would just ask him about it when he got home from work.  About 20 minutes after this conversation, Sasha approached me and told me he had something to tell me.  He then confessed that he had been eating her candy and had been able to sneak it because the cabinet lock was loose and allowed him to open the cabinet enough to fish the candy out of the bag.  Instead of feeling disappointed or angry at him, I felt only happiness that Sasha had confessed and admitted this on his own volition!!  I thanked him and praised him for telling the truth and gave him a big hug.  I asked him to apologize to his sister and he did.  I reassured her that we would replace her candy and keep it locked up in a more secure location for her. He was disappointed and angry with himself for sneaking the candy and said that he felt badly about the weight he was probably gaining from the excess sugar he ate. In contrast, I was practically elated and told him that I was proud of him for telling the truth!  Just 8 hours earlier, I had written a post to the Craniopharyngioma Facebook Group about my despondency in dealing with Sasha's chronic dishonesty that is directly related to his hyperphagia.

Despite the food sneaking, I am feeling grateful that Sasha was able to talk honestly with me and it gives me hope that we can rebuild our relationship that has been damaged by HO Monster. 

And maybe, just maybe, Sasha can keep coming forward with the hard and brave truth.

49) Trick or treat? Anticipating HO Monster's tricks on Halloween

Boo!

The holidays are upon us, starting with the most sugar-intensive one, Halloween.

While I love the tradition for its creativity (I have made the kids' costumes every year since they began trick-or-treating), it's become a dreaded holiday for obvious reasons.  Luckily, we have long practiced allowing the kids to keep only about a dozen pieces of candy to be eaten no faster than one piece per day.  The remaining candy [gets eaten by their dad (kidding...sort of) and] gets officially taken away by the "Pumpkin Fairy" who disperses the candy to "poor kids"- in its place, the PF leaves a non-food toy/book.

Now that the kids are older and no longer believe in things like fairies and Santa, we just allow them to choose a dozen pieces of candy, lock it up for safe keeping, disperse the candy up to one piece per day, and take the remaining candy to work.  We intend to keep the same practice for tomorrow but I am dreading the effect that the sugar may have on Sasha... Prohibiting all candy is out of the question so for the sake of providing a somewhat "normal" experience, we will allow him a limited amount per usual.  Even if we decided to disallow the candy, he will also likely be exposed to more candy at school with his classmates bringing candy in their lunches for the next several weeks.  Honestly, I don't believe there's much we can really do to run interference between candy and Sasha during/after Halloween and I am bracing myself for the re-appearance of HO Monster.  Since he has been exhibiting signs of continued food sneaking these past few weeks, I can only imagine it will get worse when the candy shows up in full force.

What better time, then, to add Naltrexone to our cocktail of drugs?  Ironically, it is a drug that is used to decrease the high as well as cravings for alcohol and opiates in addicts.  It has also been used, with some limited success, in treating people with binge eating disorder and has been shown to cause loss/decrease in appetite (mainly as a side effect of the drug).

Here is an academic scientific paper that describes the relationship between sugar and opioid intake:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3109725/

Here is a comprehensive summary (non-academic) of Naltrexone's possible impact on weight loss:
http://mentalhealthdaily.com/2016/04/30/naltrexone-weight-loss-what-should-you-expect/

We have returned Sasha to the 6 iu dose because his food seeking intensity was quite high in the last 2-3 weeks.  Rather than keep the 9 iu or increase the dose, we decided to return him to the 6 iu dose because we recalled how his food seeking became worse when he started in May/June on a too-high dose.  Additionally, we were warned by Dr. Jennifer Miller that using a too-high dose was not recommended due to oxytocin researchers learning that it could cause down regulation of oxytocin receptors, rendering them to become non-functional.  We will monitor him to see if we can lower the intensity of the food seeking back to his prior level (still seeking but with less intensity) and we are gradually adding Naltrexone to see if it will help reduce cravings.

P.S.  Trees continued to fall silently in the forest: Sasha's weight stayed stable this week despite his increased food seeking intensity.  We'll see what happens after Halloween...

48) Trees falling silently in the forest

We've got Sasha on a daily 9 iu dose of oxytocin from the pharmacy we used in September which was the month when we started to notice a drop in his weight.  He's had more weight loss over the week- from 74 down to 72.6 kilos in a week.   He was sick with the stomach flu last week which may explain the precipitous drop in his weight over the week.  I didn't notice any particular hyper focus on food over the week, likely due to his upset GI system.  However, I did find some Kind bar wrappers in his trash can over the week which led me to believe that he had been sneaking bars.  I even suspected that he had somehow gotten a hold of a copy of the cabinet/fridge key which caused me to rush off to the hardware store to replace the locks.  Ugh. I'm not sure what I hate more... getting into intense power struggles with him about food or getting along with him well and learning about surreptitious behaviors after the fact.  What a choice!

To my dismay he continues to act in sneaky ways around food.  Fortunately, he is somehow able to keep his food intensity private and avoid engaging in fights with me about it.  After finding out about the Kind bars that he snuck, I felt tempted to just say "f- it" and to just give him the box of Kind bars to keep for the week as his snack.  However, I don't think he is disciplined enough to pace himself and would probably eat up the box of bars too quickly.  Even so, if the oxytocin is doing something for his metabolism by helping him lose weight despite any extra food he sneaks, is there any real harm in allowing him the freedom to indulge?  If Sasha continues to keep his weight stable/lower, does that make us irrationally hyper-vigilant about his eating behaviors if we continue to monitor him so closely?  Although our oxytocin experiment is not intended to be about Sasha's weight loss (yes, I know I keep saying that!), Sasha is now approaching the weight he was when we started the experiment five months ago (and when he was at least 2 inches shorter).   If he continues to lose weight or even if he just keeps his weight stable, he may cease to be overweight...and wouldn't we look like food-Nazi parents if we continued to food-police skinny Sasha???  At what point do we trust and let go?

If a tree falls in a forest and no one is there to hear it, does it make a sound?

If Sasha "sneaks" extra food but keeps his weight stable or loses weight, did he really overeat?

47) Coping with the uncertainty of the oxytocin experiment and life in general

It's been a while since I've posted here- I last wrote about his new 9 iu dose which seemed to bring on a dramatic effect (decreased interest in food).  Since that time (13 days ago), we've noticed that the 9 iu dose has NOT been maintaining his lowered appetite.  In fact, we've noticed that his appetite has been pretty large once again. He had been losing weight steadily since early September but was up a little weight (.6 kilos) last week and was down a little (.3 kilos) this week. Again, his weight is not of great concern since he is not technically obese (merely on the high end of "overweight" according to the BMI chart) but it is a certain and measurable biomarker of his metabolism.  I continue to wish there were more accurate and reliable ways to measure his food consumption and his food obsession but we don't have a camera on him 24/7 and we can't read his mind so this wish is impossible to fulfill.  All we can really do is to continue with the exposure hierarchy and hope that the increasing freedom will lead to increasing trust...i.e.: his trust of his own hunger signals and ability to make healthy choices regarding quality and quantity of food and our trust that he can do these things without constant supervision from us or locks on the fridge and cabinets.

Due to his increasing appetite/focus on food, it has been challenging for me to practice the exposure tasks.   When I do, I find myself feeling tense and unable to let go of my policing stance with him.  I have these suspicious feelings that if I turn my back, he will grab some food and shove it in his pockets or slyly find a way to hide food somewhere for later consumption.  Argh!  It is not a good feeling and one that is based on my observation that he doesn't seem satisfied with the moderate amount of food that he used to be able to leave partly unfinished on his plate.  I know that part of the principle of doing exposure exercises is being able to tolerate the uncertainty of the task.  The phobic patient exposes himself to the discomfort of the feared stimulus (spiders, crowds, germs, etc.) and learns that his anxiety will decrease if he hangs in there long enough and practices often enough to see that there is no actual danger...in a similar vein, I have to endure the anxiety of not knowing how much food Sasha will need to eat before he realizes that his appetite is satisfied and that the sneaking/hoarding mentality is no longer needed.  If only living life were as simple as following psychological theories!  I guess I just have to press on and deal with my own anxiety about Sasha's temptations or we will not make progress. Gulp.  We have been trying different compounding pharmacies and will be going back to the one we used in September since he seemed to respond well to the oxytocin from that particular pharmacy.

Overall, Sasha is doing very well and we are grateful.  His health has been good. He is continuing to socialize at school during the lunch hour at the game clubs and went for the second time last weekend to the Magic the Gathering card game club.  His energy has been pretty decent which helps him enjoy school.  He feels much more organized this year with his classes and his grades are all As and Bs.  There haven't been any meltdowns in the last week or two.  His mood has been good.  I am grateful for all of these things.

I am grateful for the opportunity to conduct this experiment in the hopes of giving Sasha and others like him a less confined and more fulfilling life even if I don't know the outcome right now.  May I always be reminded that gratitude has the power to improve every moment of living, no matter how frustrating, confusing, or difficult.

46) Upping oxytocin to 9 iu daily to counter increased food intensity/appetite

In the last week, Sasha has had a couple of mini-meltdowns after being caught sneaking food (once at school in an opportunistic manner and another time at home when he broke the rules and snuck some extra nuts and salami during an exposure session).  His appetite appears to be increasing slowly over the last few weeks.  Interestingly, his weight has continued to decline despite his increased focus on food.  Nevertheless, I am inclined to see if increasing his oxytocin dose from 6 iu to 9 iu daily will help attenuate his increased appetite again.  I don't mind his having a robust appetite. However, I do mind getting into arguments with him about food and having to deal with a certain obsessive intensity that is reminiscent of the HO Monster... We'll see if the increase to 9 iu helps (or not)...

Well- I wrote the above paragraph in the morning and gave him the 9 iu.  Now it is 5:30 PM. I have no idea if the increased dose could be affecting him so quickly but he was definitely LESS focused on food today! Three good signs of note:

1) He ate a modest sized salad and half-grilled cheese sandwich for lunch and didn't seem to need more.

2) He had an opportunity to go grocery shopping with his dad and he ALWAYS goes when given the chance.  Today he was invited to go and he DECLINED.  I want to emphasize that this is the first time in five years that he has declined an offer to go shopping for groceries when given the chance- usually he BEGS to go and has a mini-meltdown when I tell him that I don't want to take him (due to his history of stealing and pocketing food at the store).

3) His sister is in the kitchen (as I am typing away on this posting) right now making a dessert.  Sasha is in his room doing homework.   I repeat:  Sasha is NOT IN THE KITCHEN while dessert is being made.  The Sasha we have known before oxytocin has always had a difficult time removing himself from the proximity of food.

When I remarked to him about how he turned down the chance to go grocery shopping and how he didn't mind having his sister bake without him, he was cool about it and merely said, "yeah, I just wasn't really in the mood- I wanted to look at my new Magic cards and get ahead on my homework for the week."

Here is what Sasha left unfinished on his dinner plate tonight.

Only time will tell if this increased 9 iu dose continues to help him have a more mellow and dispassionate attitude about food!

45) Socializing with his peers

My focus with this oxytocin experiment is mostly on Sasha's issues with his appetite and hyperphagia but I am also concerned about optimizing his motivation to socialize with kids his age.  His baseline personality is one that is outgoing, friendly and warm.  He is extremely chatty at times and can start a conversation with people (including strangers) in almost any situation.  However, his preferences are to strike up conversations almost exclusively with adults. This has been the case since he was a pre-schooler as I can recall many incidences of my 3 year old son usurping conversations away from me.  On one memorable occasion, I went out to lunch with my friend (Julie) and Sasha (who was 3 at the time).   My friend and I didn't see each other often so I was very much looking forward to catching up with her.  Rather than being able to have a conversation with her and having to keep my son busy with a toy or coloring book or something, I was having to watch my friend and Sasha chat it up while I sat on the side, trying to get a word in edge-wise!  After that lunch, my friend told me she thought he was a "metrosexual" because of how complimentary he was of her and how he liked that her "scarf matched her earrings," LOL!

Anyway, I think you get my point that Sasha is a friendly and social person (with adults).  Despite his naturally friendly personality, he has no (kid) friends.  It bothers me a great deal as I know how important friendships are (especially in our case since we have a teeny tiny family- besides his parents, Sasha has only one sister and one cousin, four aunts/uncles and no living grandparents- that's it).  He has not seemed to mind.  For the past five years, during non-academic times, he hangs out with his aides at lunchtime and hangs out with us (family) on the weekends.  We have tried to encourage him to meet kids and to make friends by joining activities such as bowling and chess and we socialize a great deal with our family friends on the weekends.  Still, somehow Sasha doesn't seem to get himself invited to birthday parties or to playdates with other kids.  In my observations and in the observations of teachers, Sasha appears mostly indifferent to kids his age.

Given that oxytocin is a missing hormone for Sasha and that he has had some social deficits in his disinterest in making friends and his lack of peer friendships, it is our hope that oxytocin might help increase Sasha's social motivation to befriend kids his age. There is a large body of research on the subject of oxytocin's relationship with social connection, bonding, trust, prosocial behaviors, affiliative motivation, etc. and it is frankly, very complicated to sort through due to the difficulty of isolating specific social behaviors and controlling for confounding factors such as anxiety. When I have more time,  I may write about this subject in more detail after reviewing some of the literature on oxytocin's role with social behavior.

For our purposes in regards to Sasha's social life, he has shown some improvement and interest in hanging out with other kids. For the last few weeks, he has been hanging out during lunch with some kids (including L) and playing Magic the Gathering cards. Today he was invited to a Magic the Gathering game gathering at L's house. L is the son of Sasha's dad's friend who once came over to our home over the summer for a dinner party. Turns out Sasha had a great time playing the game with the three other boys (all students at his middle school). He even said there were snacks served but that he was more focused on the game and it made it easier not to overly focus on the food. He also has had temptations to steal coveted cards (another reason I may end up trying Naltrexone one day) but was able to successfully resist his temptations.

Although it may not seem like a big deal to get invited to another kid's home for a social event, it is really a VERY big deal for Sasha. We are hoping that he can keep a friendly demeanor with this group, make good choices with resisting any impulses to take things, and be included and invited back next week when they meet again.

With his recent social invitation and successful encounter:

"It's one small step for kid-kind
One giant leap for Sasha!"

44) Good start with exposure hierarchy... oxytocin's effect on energy metabolism

As Sasha experienced his first weekend of the exposure hierarchy, we experienced a little anxiety- we had already started loosening things up a little over the last couple of months but it has always been with extreme caution and trepidation. With our official exposure hierarchy starting up, I felt some anticipation...would it backfire? Would he fail to advance? Would we have to deal with too much rule breaking and have to resort back to our awful policing again? Would he just take advantage of his newfound freedom and end up overeating and gaining weight?  Would I unravel and be unable to contain Kitchen Bitch?

Although it is extremely early to judge, I am relieved to report that none of these things happened over the weekend!  We started by practicing some easier exposure tasks.  We started with our lowest anxiety task of having Sasha make a meal with the fridge unlocked and with "light" supervision from us.  We did two sessions of this task and he did well with no detectable problems of rule breaking (by either party) or meltdowns.  He reported his anxiety/temptation level as low both before and after the tasks.  To my surprise, he actually volunteered to me that his anxiety/temptation levels would be rated higher depending on what is in the fridge and he even listed salami and cheese as food items that will raise his temptation levels.  I was glad that he was thinking in this manner and that he was forthright enough to mention it to me so that we can be mindful of it as we go through our exposures.  Although there was one incident of food stashing (where I caught Sasha in the middle of the night with a pack of nuts/dried fruit), it was due to his dad's carelessness when he left the snack cabinet open without supervising Sasha.  I pointed out to his dad that leaving the snack cabinet unlocked was clearly an advanced exposure task and one that Sasha was not ready to attempt.  I even apologized to Sasha about the mistake and made sure he knew that his stashed snack was due to our unintended neglect to lock the cabinet and not his fault for having given in to temptation.

Besides venturing into starting the exposure hierarchy, it has been a very social weekend with lots of food/entertainment which we handled quite well.  On Friday, we had friends over for dinner at our house.  Sasha ate a good-sized portion of food but was able to stop short of pigging out (nuts, cheeses, veggies, olives, and crackers for appetizers & shish kabobs, green salad for dinner & watermelon for dessert).  On Saturday night, we attended a city-wide outdoor dinner (potluck burrito bar and his own low-carb chocolate macaroons and strawberries for dessert).  Today we attended a charity event for the Pediatric Brain Tumor Foundation where he and his sister participated as models in a fashion show.  They offered a buffet spread of brunch finger foods including muffins, bagels with cream cheese, skewered fruits, egg frittata.  Despite the fact that some of these events (especially the buffet food spread today) are considered "advanced" on his exposure hierarchy, all in all, things went pretty well at these social events.  We supervised him adequately and he behaved himself with a reasonable degree of self-control, given the difficulty level of the event.

As usual, we went to the lab this morning to check his electrolytes as we do every week.  As I have previously mentioned, he has diabetes insipidus with absent thirst and it requires that we weigh him several times a day to estimate his hydration levels and then take him to the lab for a serum sodium level.  For this reason, we are able to calculate his weight corrected to a normal sodium level.  Sasha ate pretty heartily over the weekend and I was hoping that it would not cause a jump in his weight.  To my surprise, his weight slightly decreased (by 1/3 kilo or 2/3 of a pound) over the past week!

I had previously thought that any weight lost on oxytocin would be attributed to the decrease in food intake.  After all, oxytocin is known as a anorexigenic hormone, causing reduced appetite and eating.  Now I wonder if it does more than that... does it increase energy metabolism too?  How can he be losing weight when he does not appear to be eating that daintily and when his physical activity levels are not grossly increased?

In looking for some answers on the subject, I came across a few interesting papers on the subject of oxytocin's role in weight control.  Given the density of these scientific papers, I was only able to glean a superficial understanding of the main points but I believe they are compelling enough to begin to explain Sasha's ability to lose weight on oxytocin while still attending parties!

This one describes how oxytocin may have an impact on energy metabolism and homeostasis:
https://www.researchgate.net/profile/Valeria_Chaves2/publication/236580181_Role_of_oxytocin_in_energy_metabolism/links/02e7e519537d0e06ed000000.pdf

This article describes the relationship between lower oxytocin levels and those at risk for metabolic syndrome (a cluster of symptoms including abdominal obesity, hypertension, hyperglycemia, dyslipidemia, and insulin resistance):
https://www.jstage.jst.go.jp/article/endocrj/63/7/63_EJ16-0078/_pdf

And finally, if you can wade through the medical-ese of this paper, you will see that it describes the role of hypothalamic neuropeptides (including oxytocin) as being responsible for lipid and glucose metabolism in the body:
http://onlinelibrary.wiley.com/doi/10.1111/j.1749-6632.2010.05800.x/full

Happy reading!

43) Collaborating on the exposure hierarchy to food freedom

Sasha has been doing pretty well these days.  Meltdowns have been more sporadic, he has been losing a little weight over the last few weeks and we have not had any disasters or received bad news from school about his behavior.  Whew.  We know that he still engages in some food seeking behaviors (taking extra food out of the fridge) but we think that the food seeking may be out of habit and anxiety, rather than hunger. For this reason, we feel compelled to test out oxytocin's ability to control his excess hunger and to see how he handles having increased access to food.  As a psychologist who often treats patients with anxiety disorders, I know that the best way to make it successful for us is to expose him very gradually to tasks with increasing difficulty.  This is called an "exposure hierarchy" and is used to help people overcome phobias and other avoidant behavior.

The principle of doing an exposure hierarchy is to practice the task, rate the level of anxiety/difficulty, and repeat the task until the anxiety or level of perceived difficulty decreases. If and when the anxiety/perceived difficulty is steadily rated at a lower number, it may indicate that the person has achieved some mastery over the task and is ready to move to the next slightly more challenging task.

I started by drafting a list of tasks for Sasha to practice. Last week in his therapy session, he was asked to rank them in order of difficulty.  With the guidance of his therapist, Sasha ranked them in order of difficulty and presented the list to me.  After I studied the list, I noticed that some of the tasks that he ranked lower on the scale would have definitely been ranked as highly anxiety provoking to me!  For example, he put "unpacking groceries with light supervision" as #4 of 15 tasks but I would rank that as a much harder task, perhaps more like #12 of 15 tasks.  It was then that I realized that the exposure hierarchy is as much my exposure hierarchy as it is Sasha's!  I re-ranked the list in accordance to how anxious I felt and showed the list to Sasha and his therapist in today's session.  I explained to Sasha that if we are to be successful in making progress in the exposure sessions, both he and I would need to come to some agreement about the ranking of the tasks.  If he were to try a task that I deemed was easy but he deemed was too hard, he would surely fail and vice-versa, if he were to try a task that I deemed was easy and he felt was too hard, the same failure would ensue.

Before digging into the exposure tasks, Sasha and I needed to define the goals and guidelines of the exercise and they are as follows:

The goal is to increase Sasha's free and legitimate access of food in order to:

• help Sasha learn how to monitor his intake and make healthy eating choices with increasing independence 
• give Sasha more control over his own food choices so that he can overcome his anxiety about food scarcity and learn to trust his own true hunger instincts (rather than his conditioned urges to hoard food due to his habituated state of having excess hunger and food obsessions)
• develop trust in Sasha's ability to manage his food intake (both quantity and quality) so parents feel less need to police him and can decrease policing of Sasha around food

The definition of a successful exposure are as follows:

• anxiety rating decreases over time as the task is repeatedly practiced
• number of "meltdowns" decrease over time as the task is repeatedly practiced
• Sasha abides by the "guidelines of engagement" 
• Parents abide by the "guidelines of engagement 

The exposure will be rated on the following measures:

• Pre-exposure anxiety/difficulty level of the anticipated task=0-3 (rated by Sasha and parents)
• Post-exposure anxiety/difficulty level of the practiced task=0-3 (rated by Sasha and parents)
• Meltdown intensity= 0-3 Sasha's emotional reactions of anger/anxiety, etc. and tension/anxiety felt and expression by parents (rated by parents)
• Guideline respect by Sasha = 0-3 (rated by parents)
• Guideline respect by parents=0-3 (rated by Sasha)

Exposure hierarchy list (agreed upon by Sasha and both parents):

1. Leave fridge unlocked while Sasha is preparing a meal (with light supervision by parents)
2. Leave snack cabinet unlocked while Sasha is preparing a meal (with light supervision)
3. Leave fridge unlocked for 1 hour during/after a meal
4. Leave fridge unlocked for 1 hour during/after snack
5. Leave fridge and cabinet unlocked for 1 hour during/after meal or snack
6. Take Sasha to grocery store with light supervision (and a pocket check after shopping)
7. Let Sasha make a meal with no supervision (fridge unlocked)
8. Let Sasha make a meal with no supervision (cabinet unlocked)
9. Let Sasha make a meal with no supervision (fridge and cabinet unlocked)
10. Let Sasha bake with light supervision (and unlocked fridge)
11. Having Sasha unpack groceries with light supervision (unlocked fridge and/or cabinet)
12. Bringing Sasha to a potluck/buffet dinner with light supervision
13. Unlock fridge and cabinets more than 2 hours from meals (9-11 AM or 3-5 PM)
14.  Unlike fridge overnight
15. Bring Alex to potluck/buffet with no supervision

Guidelines of engagement for Sasha:

• Food accessed during the exposure must be eaten in the moment and not stashed away for later consumption.
• Food must be eaten in approved areas in the house (kitchen, dining room only- not in bedroom or bathroom).
• If Sasha is found eating food outside of permitted areas, he will be asked to finish the rest of the food in the dining room or kitchen.
• If Sasha is found to be eating food outside of regular meal/snack time or exposure session or if stashed food is found (in his room or backpack), he will be asked to put the food back until the next meal/snack time or exposure session.  If he doesn't comply, that food will be counted as his snack for the morning/afternoon/evening.
• Parents will reserve the right to check his room, pockets or backpack periodically to ensure that the guidelines about "no food stashing" are being respected.

Guidelines of engagement for Parents:

• Parents are not to micromanage via questions, nagging or criticizing of Sasha's eating as long as he is abiding by his guidelines during exposure session.
• Parents constructively review the exposure log with Sasha after every few sessions.
• If Parents disrespect their guidelines, Sasha reserves the right/duty to give parents constructive feedback about his observations

This exposure goals and guidelines are meant to help set expectations so that there is as much clarity as possible for both parties.  Even so, I fully expect it to be very challenging for us and Sasha as we navigate these choppy waters.  In today's session, we discussed how this model actively encourages Sasha to be as forthright and transparent as possible with us since sneakiness will no longer be necessary during the exposure if he wants to eat something.  Sasha understands that his open communication with me will help decrease my anxiety about his food sneaking and my decreased anxiety will help decrease the risk of having Kitchen Bitch around which would help decrease the chances of his meltdowns.  All of this, of course, would not be possible if I didn't believe that oxytocin has helped to decrease his intense focus on food.  I am only hoping that oxytocin has decreased it enough so that the extra food he will very likely end up eating will NOT result in a huge weight gain or backsliding in his metabolic health.  

I suppose we will need to evaluate this exposure hierarchy project closely to tell whether or not we are really ready for it... and if the guidelines are persistently broken or if Sasha fails to progress up to increasingly more challenging tasks- well then, perhaps we will try the Naltrexone or just take it with even more gradual baby steps.  No matter what happens, I do know that we won't know if the oxytocin experiment is working unless we try the exposure hierarchy first... 

Ready or not, here we come!

42) Updates on Sasha's weight chart May- Mid-October

I have been reluctant to post Sasha's weight changes too soon due to my awareness that Sasha is capable to going both up and down in his weight and that short term fluctuations are not meaningful in the grand scheme of things.  Changing lifestyle habits are not easy to do: "Quitting smoking" (according to the late comedian, George Burns), "is easy... I've done it thousands of times."  Most people experience losing weight in similar ways- that weight loss is hard but keeping it off is even harder. Even so, I have corresponded with many cranios and others with HO who cannot lose weight despite their very best efforts through diet and exercise. As I've discussed in a previous post, perhaps Sasha has a milder version of the metabolic disorder whereas he is able to keep his weight from climbing steadily through strict policing and watching his carb intake.  The next time I go see his endocrinologist, I will get a copy of his weight chart since his resection to check my memory but I believe his history of his BMI since his cranio diagnosis and surgery have shown him to be mostly topping the 99th percentile.  I realize that providing a weight chart alone is not the most reliable way of studying his proportional size since he is a growing boy and some weight gain as he grows taller is normal and desirable.  That said, I can tell you now that today, his weight is 74.0 kilos  (163 pounds) and he was 170 cm (5'7") tall at his last doctor's appointment 1-2 months ago or so.  According to the BMI calculator for boys, this puts him at the 25.5 and the 94.4% for his age (considered "overweight").  Personally, I find the BMI calculator too rigid as it doesn't account for muscle mass or general body build.  Sasha has his father's massive muscular legs (tree trunks!) so if his legs were normal sized, his weight would certainly be lower.  At this current weight, Sasha is at his all time lowest BMI since his brain tumor diagnosis and surgery.

The above chart documents his weight in kilos since starting oxytocin.  I have summarized some of the remarkable events that have occurred during this experiment which may explain some of the weight fluctuations.

May 14, 2016
Started his first dose (10 unit sublingual pill)

May 16, 2016
Increased dose to 10 unit pill BID (twice per day)

During this time, we noticed no therapeutic benefit from the oxytocin.  It was surmised that it was ineffective due to the method of administration so I requested Dr. Friedman to order the intranasal spray.

June 4, 2016
Began 6 iu spray

June 6, 2016
Increased dose to 6 iu in each nostril (12 iu total per day)

June 9, 2016
Two teachers gave independent feedback that his behaviors were worsening with increased defiance and insistence on eating.  Both teachers stated that the worsening behaviors were happening for the last 4 weeks.  We noticed increased food seeking episodes and meltdowns at home.

June 12, 2016
Began intermittent spacing of 6 iu every three days

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).

June 20, 2016
Sasha began to leave food unfinished on his plate and brought home unfinished food from lunch.  He later told me that during this week, he had desires to "hang out" with other kids during lunch.

June 24, 2016
HEFY (Half-Eaten Frozen Yogurt) happened!  On this day, he received his 6 iu dose and was able to leave food unfinished for every meal, including dessert.  For the two days following HEFY, Sasha asked for unusual desserts (once it was baby carrots and another time it was peanuts).

July 4, 2016
Sasha did not ask for a snack in the late morning when he saw and heard his sister asking for a snack.  This was the first time he neglected to obtain a snack when he was exposed to a food cue.
In the late afternoon, we attended a BBQ and he did not park himself permanently in front of the food table for the entire afternoon and evening.  He was able to engage in conversations with others, play in the pool, and eat more moderately.

July 7, 2016
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.
On July 15, we found that he had a huge chocolate stash and that he was 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. 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.  It is difficult to explain the ratio of which factors account for the weight gains/losses in July.  The simultaneous discovery and solving of the chocolate and thyroid problems imply that both were responsible for the weight gains/losses, respectively.

August and September (to present)
His weight climbed again in August and we noticed increased intensity around food.  We took several summer trips in August and food security was difficult to maintain and we believe that the lack of food safety posed more temptations for Sasha's food obsession/sneaking.  We also surmised that the oxytocin had lost its effect (he was still on the every 3-day 6 iu dose) so we decided he needed a dose change and on August 15, his dose was raised to a daily 6 iu dose.  After this dose change, Sasha's weight dropped again and then yo-yo'ed up at the very end of August.  So far, in September, his weight has decreased.

I know many readers are very interested in the impact of oxytocin on his weight and although it is not our primary reason for conducting this experiment, it is definitely one of the primary reasons for many to want to try oxytocin!  I am curious to see what will happen over time with his weight and I am also curious about the mechanism of weight loss (provided this is the trend over time)... Sasha's current appetite and eating pattern is observed to be moderate but not minimal.  He eats moderately and sometimes even heartily but doesn't pig out.  In fact, we just returned from a weekend away at a family camp where he even ate more carbs that he is usually allowed (indulged in some potatoes, waffles, pizza and even a cookie) and he STILL came back 1.3 kilos lighter than his last weight check 12 days ago!  Interestingly, he also had excellent energy during the entire weekend in spite of the higher carb intake and the warmer weather. Go figure!  Maybe oxytocin also helps with improving his metabolism?  Or maybe I need to write and publish that book on "how to lose weight on holiday"!

41) Are we ready yet? A strategy for letting go

A few weeks ago, Sasha and I went to see an addiction medicine psychiatrist in the Chemical Dependency Recovery Program subspecialty of the Psychiatry Department at the hospital where I work.  This appointment was made shortly after I discovered the humongous stashes of chocolate and the leftover wrappers that I found in his room one day.  I suspected that he may have great difficulties resisting temptations for sugar, especially chocolate.  I explained Sasha's complex medical history including his HO and my attempts to help him with oxytocin.  I told him that I believed he behaved in a way that resembled a "carb/sugar addict" and I wondered if an opiate antagonist like Naltrexone might help reduce his urges for sugary foods.  After some discussion, Dr. L agreed to provide him with a script for Naltrexone and advised me to try it after optimizing the effects of oxytocin first.

I'm not sure if we have truly optimized oxytocin's therapeutic effect at this point but I do think Sasha may be ready to be tested with increased freedom around food.  As I mentioned in my last posting, I fully expect him to have huge hangups about food- how could he not have a bizarro relationship to food with his own obsessive focus on it AND with our hyper-intense micromanagement of his food??  It seems that the next step would be to actually give him some liberties in order for him to learn that 1) food is plentiful and available if needed and 2) there is no need to hoard it or eat in excess anymore and 3) it will be possible to trust oneself and one's body to decide when and how much to eat which could then 4) eliminate the need for the food police to provide external "food security" since "food security" would become an intrinsically felt experience.

I am well aware of how long it could take for Sasha to overcome his deeply engrained anxiety about food given his five year history of feeling intensely hungry and focused on food whilst his parents and other adults imposed strict control and restrictions on what he was allowed to eat and when he was allowed to eat.  It's amazing he is as good natured as he is given this very harsh lifestyle he was forced to follow... Needless to say, his food police have also been deeply conditioned to feel high vigilance and anxiety about Sasha's food seeking.  It has been a tortured relationship, indeed, that we have had with food in our home!

As I anticipate this transition we plan to make, I am filled with trepidation.  I have lived in this paranoid "police state" for so long... despite my loathing for this locked up kitchen and hypervigilance around food, it is familiar and even comforting in a weird way.  I can relax in my home with Sasha because I know the food is locked up.  I cannot relax with Sasha in someone else's home because I don't know what Sasha will do around the food.

Now that he is on the oxytocin and believe we are seeing how it helps to normalize his appetite, we badly want to trust him.  If I could wave a magic wand, I would wish myself the ability to totally trust him and to just let down my guard completely when he is around food. Sigh.  If only it were that easy.  I have already learned my lesson about the need to ensure some level of security so that he isn't able to go completely whole hog before he's ready (like have access to a 24-hour grocery store's candy collection) so I will be sure to keep up a certain amount of protection even as we transition to more freedom... similar to having a net for trapeze artists, just in case they fall. So I'm not naïve to the challenge of this transition and I know there's no easy way to make these changes, only hard work.  The work we will need to do will involve a gradual letting go of control around Sasha and food.  I expect that we will start with a relatively manageable task like leaving the fridge unlocked right after meals (after he has eaten and feels full) for an hour or two and then expanding the time.  For myself, I know one of the biggest challenges will be to keep my eyes open and my mouth shut if and when I see him taking more food that I think he should have.  He may end up overeating or hoarding extra food in the beginning (I will probably still insist that he not be allowed to store or eat food in his room since it is a household rule that we eat only in the kitchen and dining room). I can only hope that over time, he will realize that he doesn't need to hoard or eat extra food since he is no longer having to live with such a feeling of scarcity and lack of control. I must tell myself to be patient with him during this transition!

So far, my plan is to write up a gradual exposure hierarchy with Sasha and his therapist and to have Sasha practice being around these new situations in which he will have more access to food.  We will start out very slowly to give him a chance to make food choices with his own discretion...we will test out the waters and I will get some Ativan (kidding, sort of) to calm down my inner Kitchen Bitch...(after all, the Rolling Stones sang about the need for this in their song "Mother's Little Helper") And if Sasha has a really hard time resisting impulses regarding hoarding or stealing food and appears to need some additional support, we will consider adding Naltrexone and see what happens...

40) Growing pains- reflections on the past five years and on what's to come

Sasha recently celebrated his 5 year "cranioversary." That is, five years ago on September 8, 2011, he went under the knife and emerged 14 hours later, forever changed from the surgery which removed the brain tumor whose effects would later be known as panhypopituitarism, visual impairment, and hypothalamic disregulation.  These medical terms, as scary as they may sound, pale in comparison to the experiences that we have lived through these past five years.

Sasha has been a brave soul and has weathered intense rehabilitation to try to improve his condition as close as possible back to baseline.  Like many cranios, he suffered severe short term memory problems and executive functioning problems.  He has undergone speech and physical therapies and has worked with an educational therapist to help him with his learning problems.  He has had to (and still does) endure weekly blood draws to check on his electrolytes due to his lack of thirst mechanism and his diabetes insipidus.  He has been hospitalized on several occasions when he became acutely ill and suffered a adrenal crisis.  The condition of adrenal insufficiency and the crisis brought on by the condition is a life threatening one and we are fortunate indeed that his life was spared during these crises.  He has had to deal with chronic fatigue and day time somnolence. He has had to cope with needing to take a number of medications several times a day on which his life is dependent and has learned to give himself injections for his growth hormone (and will be starting testosterone soon as he nears his 14th birthday).  He has dealt largely with all of these life-changing issues and problems with the sole support of his small family and helping professionals and with little to no support from friends due to his apparent lack of motivation for peer-friendships. These are a partial list of what he and we have endured these past five years. And of course, Sasha has had to deal with the extremely life-limiting problem involving his food/metabolic issues.  These problems, which I've documented here, are what inspired my decision to experiment with oxytocin.

This evening I will join Dr. Friedman when he presents his webinar on the posterior pituitary hormones:

Sunday, September 11, 2016 
6:00 pm | Pacific Daylight Time (San Francisco, GMT-07:00) | 1 hr 
Meeting number (access code): 801 818 437 
Meeting password: hormones
Join by phone
+1-855-797-9485 US Toll freeYou can join on a website (that will allow you to hear the presentation and view the slides) or by telephone (that will allow you only to hear the presentation). There will be time for questions by “chat" and the video conference will be posted a few days later on Dr. Friedman's website: http://goodhormonehealth.com/ 

All are welcome to listen to the webinar: https://axisconciergemeetings.webex.com/mw3000/mywebex/default.do?service=1&siteurl=axisconciergemeetings&nomenu=true&main_url=%2Fmc3000%2Fe.do%3Fsiteurl%3Daxisconciergemeetings%26AT%3DMI%26EventID%3D492180572%26UID%3D0%26Host%3DQUhTSwAAAAIehSNXRzYmluHW5ZMtuhehoJ4P2wSm8KdoIwqkoac1s5QpjrBIoudB69aj_NDKITH04GUKItwGOf_O5PSFjtNt0%26FrameSet%3D2%26MTID%3Dmfd4489a5920c1b71d367349284db700c

As I anticipate the questions I may receive from interested patients or medical providers, I have to admit that it is not easy to come to any conclusions yet as to the efficacy of the oxytocin on Sasha's hyperphagia problems.  His appetite appears to be more moderate and so far, his weight fluctuates but appears to be more-or-less stable of late.  He still has tendencies to be opportunistic in his seeking of sweets and other junky foods that are prohibited in his eating regimen as I have noted in a recent posting.  I surmised that some of the recent food seeking may have been due to the ineffective administration of the spray but that is just a guess.  The truth is that it is never clear to us what is REALLY going on because we don't have cameras on him 24/7 and because he is not a reliable reporter of his eating behaviors.

If we believe that the oxytocin is in fact lowering his appetite and giving him the opportunity to obsess less about his hunger and need for food, it will perhaps be possible for Sasha to have a normal relationship with food someday (my primary goal for the oxytocin treatment). As I have noted in a recent post, it is a very complex adjustment we are attempting to make as we try to figure out what new privileges, if any, he is able to handle in his life.

On Friday, we learned that Sasha helped himself to purchase an ice cream sandwich from the ice cream vendor after school.  His sister saw him do it and reported it to us.  Sasha was very upset (that he had been caught, that he had omitted to tell us about the ice cream, that he bought the "forbidden food" or a combination of all three?) and looked so sad when we told him about our knowledge of the ice cream.  We talked with him about how hard it is for him to have been deprived of having access to sweet treats all of these years.  We want to believe that he may be able to handle having an occasional treat like ice cream and we would really like to believe that he may one day be trusted to be able to make healthy and reasonable choices for himself around food.  I sometimes wonder how he might be different from the millions of overeaters who don't have a brain tumor on the hypothalamus to explain their hyperphagia.  These people live in the world, albeit not always in an optimally healthy body, without being followed around by the food police!

If Sasha continues to keep his weight stable, has minimal to no metabolic diseases, and shows signs of having self-control over his food intake (eating with discretion), it seems it would be completely reasonable and natural for him to have more allowances and freedom around food.  For the past five years, he has been policed around food.  From the police officer's vantage point (ours), the policing has been necessary to keep him from engaging in eating without discretion (eating the wrong foods, stealing food, overeating).  From Sasha's perspective, the policing probably intensified his desire for the food and trained him to become even more tricky and deceptive.  It has been a vicious cycle, a cat and mouse game and one in which the biggest loser is trust... sadly, HO and our food-policed lifestyle have sacrificed our ability to trust Sasha and Sasha's ability to trust himself.  We anticipate that it will be just as difficult to condition ourselves to trust him again as it will be for Sasha to trust himself.  To characterize the scene: HO Monster and Kitchen Bitch are in a duel and both have to surrender the weapons in order to make a truce.

We have somehow managed to get him to this point in the experiment where he "looks good on paper" to most endocrinologists... his weight is stable and below the obese range, he is not insulin resistant, his lipid panel is mostly normal, and maybe his hunger/appetite is even starting to normalize.  If these positive things remain consistent, we feel that our next task will be to undo the (necessary) damage that has been done to Sasha from our five years of usurping control over his food.  We hope that we will be able to find a gentle path back to trusting him and giving him a chance to trust himself and his own body.  This is wishful thinking. I don't expect that it will be easy at all and that there will continue to be lots of bumps along this path.