84) Getting used to the "new, new normal"- what are the functions of the hypothalamus anyway?

Ho hum, our lives are kind of boring now without the HO Monster rearing its ugly head.  Not that I miss that "excitement"- I guess I'm saying that that I am getting used to the "new, new normal."  We are continuing the open snack cabinet and things are going well.  Sasha's weight is stable more or less.  He had his testosterone dose almost doubled last week so we will expect some weight gain from possible increased appetite, muscle and bone density, and height growth.  If he continues to do well with his open snack cabinet, the next exposure will be to continue with the snack cabinet and to have the fridge unlocked 24 hours a day (right now, the fridge is unlocked only during the day time).

We finally got our fresh batch of oxytocin in the mail.  Due to our trip in New York and my forgetting to order the refill on time, the OT refill was delayed and then further delayed when the pharmacy neglected to send the order after the weekend.  I believe we were using OT that was expired by one week.  We noticed that toward the last couple of days before we received the fresh batch, Sasha was showing slightly more food interest; talking about food more and showing a little more urgency to eat.   However, it still paled in comparison to how he used to be pre-OT.  In the old days, food seemed to be constantly on his mind (and our minds, by proxy).  If he wasn't actively eating it, he was cooking it, asking for it, talking about it, plotting to sneak it, sneaking it, lying about it, and/or melting down over it.  Now that he's back on the newly compounded drug, he's back to a moderate appetite, no evidence of sneaking food, varied topics of conversation (not limited to food only).  As a result, we have a much more peaceful household and a feeling of normalcy again.

As I may have shared before, certain researchers have taken a keen interest in our experiment and one in particular has asked to see his post-operative MRI scans to see if they might reveal information about the specific areas and extent of his hypothalamic damage.  For more information of hypothalamic anatomy and functions, see website: http://humanbrainfacts.org/hypothalamus.php.

Besides the obvious excessive hunger/appetite/weight gain from his hypothalamic obesity, we are certain that Sasha has suffered extensive damage post-surgery due to the impairment in several homeostatic functions:

1) Poor temperature regulation.  In the past, he was physically unable to sweat no matter how hot he felt and no matter how warm the air temperature.  He also has a hard time warming up in the cold conditions.  Once he suffered a very scary adrenal crisis and became bradycardic (heart rate slowed to 30 beats per minute) and his rectal temperature dipped down 87 F (30.5 C).  Despite this dangerously low body temperature, Sasha did not even shiver!  Interestingly enough, although he is still rather heat intolerant- he prefers the temperature to not exceed 75 F (23.8 C) or he feels uncomfortably hot- he now reports that he sweats a little on his head!  We are not sure why or when this changed but it appears to have been improved in the last year- could this be due to oxytocin?  Who knows?

2) Poor circadian rhythm regulation.  His sleep is often disrupted with difficulties staying asleep (waking in the middle of the night, 3 am is typical).   He also has had day time somnolence.  We try to rectify his irregular sleep with good sleep hygiene (regular bedtime, removal of electronics at night) and low dose melatonin before bedtime and stimulants during the day for wakefulness.

3) Non-existent thirst mechanism.  Yet another missing homeostatic function that is missing with Sasha is his thirst instinct.  He doesn't have one and this makes his Diabetes Insipidus extremely challenging to manage.  While most people with intact thirst can manage DI by drinking when they are thirsty to prevent dehydration, Sasha relies on an extremely high dose of DDAVP (0.2 x 20 pills per day), frequent weighings, forced drinking (although the Kitchen Bitch has mostly retired, the Water Witch is alive and well, alas!), and weekly lab draws to check his electrolytes (sodium).  While he has had a history of needing to be controlled from eating to excess, we have the exact opposite problem with his drinking since he has NO DESIRE whatsoever to drink any fluids.  His sodium levels have been in the high 160s (normal is between 135 and 145) and he still has no inkling of thirst even at these dangerously high Na levels. This missing homeostatic function is a very grave one, indeed, and we often wonder how long Sasha would be able to live independently without dessiccating to death if we weren't around to nag and bribe him to drink water.  Although oxytocin is supposed to also have antidiuretic properties, we have not noticed much extra water retention with his oxytocin.  Perhaps this is due to the fact that he takes only a relatively low dose of OT?

4) Impaired social motivation.  I've documented frequently in this blog how Sasha lacked any interest in forming friendships with his peers. Now that he is taking OT, he has made and maintained a friendship with a boy his age.  Although I would say he has only this one close friend, he has been demonstrating increased friendliness and sociability at school with his classmates and hanging out with kids during lunch time every day (rather than hanging out exclusively with his para-educator aide). His demonstrated improvements have been enough to meet his IEP goal in this topic area.

5) Excessive hunger, food seeking, and weight gain.  This area does not require much elucidation since it is the main topic of this blog.  To our relief, OT has provided great improvements in all of this areas related to his excessive hunger, food seeking problems as well as improvement in his metabolic health.

6)  Compulsive behaviors.  Although not well known in the medical literature, it has been anecdotally observed by caregivers and craniopharyngioma patients that there is a prevalence of compulsive behaviors in association with hypothalamic obesity.  As I've mentioned, Sasha had a history of acquiring items for a collection and many of his cranio peers have also had similar tendencies or have demonstrated other types of stereotypic, OCD-like behaviors.  This article sums up how is also related to a hypothalamic function: http://news.yale.edu/2015/03/06/multitasking-hunger-neurons-also-control-compulsive-behaviors.  Since being on oxytocin, Sasha has since stopped his compulsive collecting behaviors.

Functionally, I think it is obvious that Sasha has suffered a significant amount of hypothalamic damage.  However, from what I understand, it is quite difficult to ascertain damage to the hypothalamus from examining scans alone... we will see how much information can be gleaned from his scans, to be determined.