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.