79) Got snacks? Sasha has free-range access to his own snack cabinet now! How did he do?

Sasha's snack cabinet at the beginning of the three-day exposure

After 6 months on a therapeutic dose of oxytocin (6 iu daily), we did the unimaginable...we unlocked a snack cabinet just for Sasha! As a baby step, we decided to give him an introductory 3-day trial with a generous stock of healthy snacks he likes to eat.  To optimize his chances for success, we decided to pack the snacks in single serving containers so he can eat a pre-packed portion size. In the cabinet at the outset of the first three days were 5 small containers of peanuts and raisins (2/3 peanuts, 1/3 raisins), 3 containers of popcorn (enough for a medium-sized bowlful) and a package of low carb crackers (to be eaten with peanut butter, the way Sasha likes).  The cabinet contains snacks he eats for his school lunches and for after-school/before-dinner snacks and contains food that is reserved for Sasha ONLY. It stays unlocked 24 hours a day. We also leave the fridge open during the day (locked at night) so that he can choose food from the fridge instead of the snack cabinet if he decides he'd prefer to help himself to salami, cheese, celery/peanut butter, carrots sticks, or fruit. 

The rest of us have the same snacks locked up in a separate cabinet. There is no unhealthy food that is off-limits to him kept anywhere in the house.  In order for this experiment to work, Sasha needs to know that there is nothing special locked up anywhere that he isn't able to access himself. At the end of the first three day trial period, we will be able to take a look at the food that is left and use it to assess how he did and how much food to stock for the next 3-4 days.  If he does ok (managing his rations, eating reasonable amounts and at reasonable times of the day, avoiding large and rapid weight gains), we will continue the trial and extend the amount of open-access snack foods to one full week.

This is a radical departure from our 5 + years of food locking and policing!  One huge contrast to the old days is that we are now erring on the side of stocking the cabinet generously because we want him to have a sense of abundance.  Another change is that we are backing off quite a bit while he makes his lunch that he brings to school. Since he has the freedom to help himself to the open fridge and his own snack cabinet, there is really no point in monitoring what he packs for lunch. Although I am still curious about what and how much he brings to school to eat, I am resisting the urge to inquire into his lunch contents so that he knows that we are trusting his judgment and so he can gain confidence about his ability to self-regulate his food. With these newly gained liberties, we know that there is a chance he will exploit the system; overeat or eat at inappropriate times (middle of the night)...especially as he is getting used to this freedom.  We are hoping that the novelty will eventually wear off and that he will habituate to it and learn that there is no need to overeat, sneak, or hoard food. 

Sasha's snack cabinet at the end of the three-day exposure

Although it is too early to judge success sustainability, I am still very happy to report that Sasha had a successful and positive experience for the first three days.  In his description of his experience, Sasha reported to me this morning that he liked having his own open cabinet.  He shared that his "head hunger" was minimal this week- to his surprise, he was not preoccupied with the open cabinet of snacks that was now accessible to him.  Interestingly, he admitted that he has had a history of sneaking food from the other snack cabinet (when it contained all of the snacks for the entire family). Of course, we already knew that he had this tendency so the interesting part was that he was admitting it in an unsolicited manner: in fact, this morning he self-reported that he was not feeling tempted to sneak food from the remaining locked cabinet (where the rest of the family's snack food is stored) because he knew that he had (the same) food accessible to him whenever he wanted it.  He also said that he liked having the food individually portioned out so that he did not have to think about how much to serve himself. 

Sasha was basically reporting that he has felt calmer this week about food and I must concur that I observed his calmness as well. Because we know not to take Sasha's reports as gospel (due to his tendencies to lie when it comes to food), our main gauge to tell if the experiment has a net positive impact on his overall health will depend upon his ability to maintain his lower BMI since we don't want this freedom to come at the expense of his metabolic health.  Again, we know his weight seems to wiggle up and down so the minor ups and downs are not significant- however, this week (even with the open snack cabinet), Sasha lost weight again- down one kilogram from last week.  Sasha is now 5'9.5" and 157 pounds  or 176.5 cm and 71.4 kg... 22.9 BMI, 85%- his lowest EVER since brain surgery!

WOO HOO!  I think it's safe to say that we will continue on with the open snack cabinets this week!

78) Biting the bullet as we try a new exposure: unlocking and assigning Sasha his very own snack cabinet

It's funny how quickly things change in our world... just a few weeks ago, I felt devastated and so lost when Sasha was caught stealing candy bars from the supermarket and we detected more intense food obsession.  Luckily, things calmed down a bit after we lowered him from the 10-day trial on the 9 iu dose, resumed the 6 iu OT dose, and added back his melatonin (this time at a recommended, lower .3 mg dose).

Don't get me wrong, I'm not implying that our hyperphagia woes are fixed...!  However, I will say that Sasha is at his all time lowest BMI (23.1 last weekend), his metabolic health is good (he no longer hypersecretes insulin and his cholesterol panel is WNL as are all other general markers for his metabolic health.)  Our original intent for this oxytocin experiment has always been (and still remains) focused on helping Sasha develop a normal and healthy relationship with food.  As you have read in this blog, Sasha's HO has caused him to have an intense preoccupation with food which has caused him to overeat, hoard food, steal food, and be driven to the point of distraction by food.  From the time he got out of surgery until recently, in order to prevent the negative consequences of his behaviors, we have relied upon locking up food and strict food policing . Of course, we would have continued this restrictive and torturous lifestyle out of necessity if we had to because it was the only way we knew to keep Sasha safe from eating without discretion and engaging in other forms of food seeking.

As best as we can tell from living with Sasha and observing him closely during these past 8 months on OT, he has decreased his intense drive for food and appears to have an easier time with satiety and with his ability to focus on other things in life besides food.  Up until now, our food exposure has been limited to keeping the fridge open during the day (still locked up at night to prevent food foraging at night) and to giving him light supervision while he makes his own lunch.  We have tried other forms of exposure (unlocking the cabinet for short periods of time) but it was never very successful because it always felt too scary for us and too tempting for him. Well, now we believe that we are ready for a new exposure idea...

In this exposure, we will allow Sasha to have free access (24 hours a day) to his OWN snack cabinet. The fridge will remain unlocked during the day. We will estimate the amount of snack foods he eats in a given week (to include all foods he ingests; breakfast, lunch, dinner and snacks) from the snack cabinet.  The cabinet will contain a (generous  side of a) week's supply of these foods and will remain unlocked for Sasha's use ONLY.  The rest of the family will keep snacks locked up in a separate cabinet for our consumption.  We will discreetly check the "inventory" of his snack cabinet during the week to see how Sasha is pacing himself but we will not police him so that he can make his own decisions about how he eats the foods.  If he eats 7 days worth of snack foods in two days, we will note it and try to coach Sasha to see if he can learn how to better pace himself.  We will expect there to be a learning curve as Sasha gets accustomed to pacing himself and to controlling himself around the accessible food.  We will expect some weight gain as well while he is in this learning phase.   If Sasha reports that he is anxious or feels driven to distraction by the available food, we will do what we can to support him and to make adjustments to the exposure, as needed.

This exposure will require some valuable learning and will hopefully accomplish the following:
1.  Having access to his own stash of snack food will give him more security in knowing that food is something that he has the right and ability to control.
2.  Having access to snack food 24 hours a day will make it unnecessary to hoard and stash food  in his room since it will be accessible whenever he wants it.
3.  Having access to his own snacks will give him the motivation to ration his own food- we will encourage him to bundle his rations up in single-portion sizes so he has a better idea of how much to eat.
4.  He will be less likely to "steal" food since he will only be stealing from himself!
5.  If Sasha ends up having a hard time managing the ability to self-control his food, he has the motivation to tell us and to ask for support since he does not want to put on extra weight or be unhealthy.
6.  As Sasha becomes accustomed to the free access to food, it will decrease the allure of the food and cause Sasha to have a more mundane relationship to food (rather than seeing it as a "forbidden fruit", something to crave and covet).

We definitely anticipate that there will be some challenges especially in the beginning- he may overeat, he may not be skillful at rationing his food, he may demand more food after he runs out of his ration (and we will feel conflicted about how to handle it), he may gain weight, he may be driven to distraction by the availability of the food, he may even wake up in the middle of the night to eat, and Kitchen Bitch may just rear her ugly head and be unable to contain herself at times.  I predict that all of these things (and more) may happen as we adjust to this exposure.  In theory, over time, Sasha will learn how to have a more normal relationship with food- eating when he is hungry, not eating when he is not, knowing how to practice portion control and how to ration his food in a reasonable way. It sounds good in theory but the reality may be a very different story! Am I nervous?  Hell, yes.  I'm sure he is too.  However, this is why we did the oxytocin experiment in the first place and we must now put on a brave face to put Sasha and oxytocin to the next test...all we can do is try.

Wish us luck!

77) So far, so good: taking low dose melatonin and 6 iu oxytocin, "less is more"

http://news.mit.edu/2001/melatonin-1017

The lesson I have learned about dosing with OT and MT is that maybe less is more. I have also picked up a new fancy-pants word: tachyphylaxis. During the period of time we noticed worsening symptoms, it was suggested that perhaps Sasha had been overdosed on OT and/or was experiencing tachyphylaxis, a rapid appearance of progressive decrease in response to a given dose after repetitive administration of a pharmacologically or physiologically active substance.

How it's been explained to me regarding OT; sometimes a dose that is too high may bind to vasopressin receptors, producing adverse effects (increased food seeking, moodiness and irritability).  It's been explained to me that taking a too-high dose of OT may not only be ineffective, it can burn out OT receptors and sometimes prolonged dosing may cause desensitization to the OT.   What I am reporting is from a layperson level of understanding from my (email) correspondence with OT researchers so please take this information as a lay person's generalized summary of what's been explained to me.  From what I gather, there is insufficient research to demonstrate OT's long term effects.  I can say that I have learned anecdotal information from my OT researcher connections that the antidote to this overdosing may require a washout period- that is, a complete detox from the drug.  Anecdotally speaking, some cases have benefitted from a washout period and have been able to then regain therapeutic benefit, sometimes even at a lower dose than the dose given before the washout.

Due to the appearance of regressive behaviors during the 9 iu OT dose and after consulting with some OT experts, I had considered having Sasha go through an OT washout.  Fortunately, Sasha's behaviors (and weight) seemed to settle down after resuming the 6 iu OT dose.  It seems that he is also gaining some additional benefit from the lower dose MT so far.  Again, time will tell and for now, we'll hang in there with the 6 iu OT dose and the .3 mg MT dose- as always, observing with eyes wide open.

76) New week, new theory, new attitude

So far this week has been much better than last.  Getting the news on Sunday that Sasha lost a significant amount of weight (1.8 kg or 5 pounds in one week) for the first time since December was good news- this is not because he needs to lose weight, but because the weight loss is a sign of improved metabolism consistent with the changes we saw during the fall when he showed more improvement overall with his reduced appetite, improved mood, decreased food seeking, etc.  To me, it was a sign that maybe we were back on track with the therapeutic doses of both melatonin and oxytocin.  It's still too early to tell but my husband and I have both detected Sasha's improved mellowness around food.  It is actually palpable... he appears more relaxed and less anxious about eating!  His mellowness then definitely rubs off on us and we can also relax a tiny bit more.  Ahhhhhhh.

After quite a bit of thought and consulting with other parents of adolescent boys, we are trying out a new theory to explain his increased hunger, food seeking, and weight gain over the past month or two.  Besides the possible metabolic disturbance from the addition of testosterone, subtraction of melatonin, and temporary change of oxytocin (from 6 to 9 back down to 6 iu), we believe that part of his hunger may be easily explained by his simple need for more food because of his current GROWTH SPURT. On December 18, he was 172.1 cm (5'7.75") and weighed 70.6 kg (155 pounds). He started testosterone on December 21. Today he is 175.9 cm (5'9.25") and 71.9 kg (158 pounds).This means that he has grown 1.5 inches (3.8 cm) in 11 weeks which is equivalent to growing 7.1 inches (18 cm) in one year! Yikes!  That is rapid growth!  What all parents of teenage boys tell me is that they get HUNGRIER.  Of course, we are traumatized by Sasha's hunger because it has been HO hunger, a very different type of hunger when he was constantly obsessed with his next meal or snack.  Intellectually, I know that teenage boys get hungrier but when Sasha gets hungry. I get anxious (at best) and turn into a kitchen bitch (at worst).  This is not a helpful way to be with Sasha since I know it makes him more upset and more likely to rebel and seek food. 

We know that he is going through puberty, thanks to that weekly testosterone shot.  We see the changes in his body (more muscle, flatter stomach, pimples, breast changes) and of course, he's growing taller, too.  I get it!  But it's still hard for me to get my head around the fact that Sasha will NEED more food to keep up with his growth, duh!  Despite his probable NEED for more calories, we have not been permitting the increase of calories.  Maybe his increased food seeking and food intensity is in reaction to his genuine hunger from this growth spurt?!

*sigh*

I need to "chill-ax" as my daughter says and have a new attitude about Sasha's physiologic need for more food now.  Of course, we will still stick to his lower carb, higher protein, higher fat diet and hope that providing more food to him will help ease his hunger.  We shall see what happens as we try to relax and permit more food to Sasha- stay tuned...

75) Feeling discouraged...managing hormones= the art of herding cats

I haven't used the blog as a venting platform in a while so please indulge me now.

In sum, Sasha was doing pretty well through the end of the holiday season and seemed to be quite happy in the beginning of January- he has been developing his friendship with his buddy, A, and his health has been good (except for a regular cold and the weird crisis with his blurry vision a few weeks ago).  His BMI had reached the lowest ever after his continuous weight loss over the previous four months. He did start to gain weight at the end of the December which happened to coincide with the start of testosterone.  I wasn't concerned about the weight gain since his BMI has been kept steady by the increase in his height (currently he is 5'9.25" and 158 pounds or 175.9 cm and 72 kg).

However, by mid February, I started to also notice the return of some of his food intensity.  I wondered if he needed to change his dose of oxytocin so I raised it from 6 iu to 9 iu starting on Feb 17.  During this time, his food seeking seemed to worsen.  We saw some signs of empty snack food wrappers in his room (that were somehow snuck out of our locked kitchen cabinet... not sure how?) and I also noticed that he was more preoccupied with food and had more emotional meltdowns than he had had in prior months.  It was stressful and painful to watch the regression and to be reminded of how he used to be but the telltale signs were there.  After about 10 days on the 9 iu oxytocin, we returned him to 6 iu on Feb. 27.  To make matters worse, I just received news from his case manager teacher at school that kids have been complaining about "missing cards" at lunch time.  No evidence has appeared to apprehend Sasha but the suspicion rests on Sasha for his history of taking cards.  Although there is no proof that he took the cards recently, I'm sure he has taken them in the past and perhaps he took them recently or perhaps it is merely the bad reputation he has established for himself, alas.

Things got even worse when he took a walk yesterday with our friend, M, and her three dogs.  While walking down the street by the supermarket, he reported to her that he had a sudden urge to pee.  She had no choice but to let him go into the store and because she had three dogs with her, she also had no choice but to let him into the store unsupervised.  Well, of course it was the perfect opportunity for Sasha to steal food. When he came home, his dad searched his pockets and found a large handful of candy bars in his pocket.  Sure enough, he admitted that the temptations were too strong when he saw the candy and he succumbed to taking the candy. You can't imagine the disappointment we felt.  He was immediately sent to his room and took to his bed, falling into a convenient slumber to temporarily block out his shame and self-loathing. As his parents, we were left feeling very much raw with emotion- angry, powerless, frustrated, demoralized, and yes, very discouraged.

It appears that he has regressed from his prior state of improved satiety and decreased food intensity and food seeking.  The behaviors we have seen lately resemble what we used to experience before oxytocin took effect: preoccupation with food, evidence of food sneaking, and emotional meltdowns over food.  WHY?  I wish we knew.  After picking myself off the floor and licking my wounds after this disappointing week, I had no choice but to put on my detective hat again in search of answers in order to get us back on track.

As far as we know, the only changes to his lifestyle since we've observed these worsening behaviors have to do with his medication regimen where one hormone was added, one hormone went missing, and another hormone was (temporarily) increased and then returned to its original dose. The few clues I have about the changes in Sasha have led me to explore the involvement of:
1. skipping melatonin for about 4 weeks in mid- Jan to Feb. 19 (this was entirely by default- we ran out and kept forgetting to order more).
2.  adding testosterone starting Dec 21 (after continuous weight loss from Sept 1 to Dec 21, he began to gain weight almost exactly one week after starting T).
3. increasing oxytocin from 6 iu to 9 iu for 10 days starting on Feb. 17 (this period of time seemed to be associated worsening food intensity and moodiness but it is hard to tell if this is causative, correlative, or just my imagination?)

Through some networking with oxytocin researchers (special shout out to Dr. Sue Carter of the Kinsey Institute), it was brought to my attention that melatonin is another hormone that is instrumental not only in regards to regulating circadian rhythm for sleep, but also for other important homeostatic functions.

Some papers on the deficiency of melatonin among survivors of craniopharyngioma:
1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2715212/
2. http://www.eje-online.org/content/170/6/873.full.pdf

A reduction of melatonin production has been shown to induce insulin resistance, glucose intolerance, sleep disturbance, metabolic circadian disorganization, all of which leads to obesity.  Once again, its mechanism is complex and beyond my understanding but endogenous melatonin secretion is something that appears to be lacking due perhaps to the damage to the suprachiasmatic nuclei of the hypothalamus (the area that regulates melatonin secretion by the pineal gland).

While Sasha has always taken 6 mg per night of melatonin, he neglected this important hormone for about 4 weeks after we ran out and kept forgetting to order more! We know that the hypothalamic damage to his brain affects his ability to regulate his circadian rhythm and that he suffers from chronic sleep disruption. Many cranios suffer from disrupted night time sleep AND day time somnolence. With melatonin replacement, he optimized his sleeping at night and maintaining wakefulness during the day. With some reflection and after restarting his nightly dose of melatonin, he did admit that his night time sleep quality/quantity was worse during the time he was not taking melatonin. Could it be that skipping the four weeks or so of melatonin contributed to the cause of his metabolic and subsequent behavioral regression? What other hormones might be affected by his 4-week-long neglect of taking melatonin?

Some papers on melatonin's role in metabolic health:
1. https://www.hindawi.com/journals/ije/2015/591729/
2. http://onlinelibrary.wiley.com/doi/10.1111/j.1748-1716.2012.02410.x/full
3. https://link.springer.com/article/10.1007/s11154-009-9117-5

A paper describing melatonin deficiency and dysfunction:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3354573/

As for the addition of testosterone- from what I gather and as I've mentioned before, I expect that it increases muscle mass, bone density, and promotes sexual development, etc.  What I don't know is how much/if adding T affects the balance of his other hormones.  Does adding T affect oxytocin and vice versa?  Does T interact with melatonin or lack thereof? Does adding T affect other hormones, his mood, impulse control, appetite, etc.?  Could it be that it makes him more temperamental, impulsive and hungry (aren't these stereotypes of teenage boys?)  possibly causing increased food seeking? Who knows?!

As for what appeared to be his worsening symptoms for the 10 days when we raised his oxytocin to 9 iu (to confuse things more- for the first two days during his 10 day stint of 9 iu oxytocin dose, he wasn't taking melatonin and for the remaining 8 days, he started back at his usual 6 mg dose)- who knows?  We did try increasing the oxytocin once before from 6 to 9 iu and it also seemed to worsen his behaviors.  Perhaps this just confirms that 9 iu is NOT a helpful dose for Sasha.  On the other hand, he wasn't on testosterone before when he was tried on 9 iu of oxytocin.

Today Sasha's weekly Na test showed us that (despite the increase of his food seeking), he LOST a significant amount of weight, 1.8 kg (5 pounds) in the past 7 days!  Why? Was it the lowering of his oxytocin dose back to 6 iu?  Was it the combination of being on the original lower oxytocin dose along with his resuming his nightly melatonin dose (first time both meds were taken together at their original dose since mid-January)?

Questions I ask:
1.  Should I try to change the dose of oxytocin- higher or lower than his 6 iu dose?
2.  Should his melatonin dose stay at 6 mg or go lower, perhaps as low as .5 mg (as I've read in some papers about the physiologic dose of melatonin)?
3. What other hormones might need adjusting now?
4.  Did the subtraction of melatonin during the 4 weeks from mid-Jan to mid-Feb have anything to do with his weight gain and intensified food focus?

My weary head is spinning....managing replacement hormones IS like herding cats!

So while I fumble clumsily to try to grasp at the two most humbling tasks of my lifetime: 1) raising a child with cranionpharyngioma and 2) being a blind pioneer of this oxytocin experiment- I am humbled to my core.  My utter desperation for a solution to the problem of HO and hyperphagia forced me to try this experiment and I cannot go back now after tasting a bit of normalcy and seeing that there IS hope for HO.

Our recent experience with this regression makes me think about a powerful book (Flowers for Algernon) I read in high school.  In the book,  the intellectually disabled protagonist (Charlie) undergoes an experimental surgery which greatly increases his intelligence to a genius level. With his newly acquired intelligence, Charlie's life expands and he ends up having many new experiences (not all good).  At the peak of his intellectual power, Charlie ends up detecting a grave flaw made by the scientist who created the experiment.  Sure enough, the lab mouse (Algernon) who was the test animal for this experiment eventually loses his intelligence and dies.  It is a foreshadowing for what is to become of Charlie; he eventually regresses back to his lower-intelligent self.  Of course, I shudder to think of Sasha ending up like Charlie in the story, permanently regressed back to his HO Monster self.

With some patience, luck, and help, I hope to regain our lost footing and to get back on track. I welcome any feedback, suggestions, info on illuminating studies, anecdotal information, and any ideas about what could be contributing to this (hopefully temporary) setback.