21) Uh oh... trouble in paradise?

I never promised that this blog would only contain happy and good news.  I believe in telling it like it is so here is what happened today and yesterday:

Sasha has been on his once every three day dose of oxytocin and things have been going well.  He received his last dose yesterday morning.  Unfortunately, he accidentally sprayed it into the nostril where he had just applied some petroleum jelly- he had been having bloody noses in one nostril and was applying petroleum jelly several times a day on a daily basis to prevent the nose bleeds.  In case you're wondering, we don't think the nose bleeds have anything to do with the oxytocin spray because they have long preceded his oxytocin spray.  The petroleum jelly has been working to prevent the nosebleeds and it all worked out great when he was spraying the OTHER nostril with oxytocin...

Anyway, I was aware of his choosing the incorrect nostril yesterday and I was vigilant about it in case it ended up not being properly absorbed.

Well... maybe I was being a little too vigilant (or not) but I did notice my Kitchen Bitch hackles raising a few times when I thought I saw him acting like his old sneaky self again around food...  then yesterday his sister told me that her Kind bar was mysteriously missing from her lunch box yesterday (they attend the same camp this week)... he was also eating more of his food than he had been eating at snacks and meal times... he was also more irritable and argumentative about food... Oh, no, I was starting to see the old Sasha again!

Then today was the clincher that told me something was definitely amiss... his camp director called to say that he saw Sasha eating a small chocolate candy bar (who knows where it came from??) and when confronted, Sasha denied it.  However, since the director pointed out the evidence while he was caught in the act, he had no choice but to admit it.  In his typical fashion, Sasha became sullen and withdrawn.  The director later saw Sasha writing his name on the bottom of another person's ceramic project as if he were the one to have made the piece (!)... it was as if he were trying to steal another person's creation and claim it as his own.  As an aside, he has had some past problems with compulsive acquiring of non-food items.   I wrote up a survey on this topic for cranios and received 146 responses from survivors or their caregiver proxies and learned that the acquiring (collecting, hoarding, stealing) of non-food items is also a phenomenon among cranios.  The high prevalence of this behavior has not been documented in the medical and psychiatric literature but I plan to write a paper describing this behavioral pattern.  More about this later in another post...

Getting back to today- I ended up talking to the director who was VERY kind and understanding and then I talked with Sasha about his behavior at camp.  I knew to be gentle and non-confrontational because I did not want him to melt down and become a larger problem for the camp director and staff.  Luckily, Sasha responded to my gentle approach and admitted to me, "something is wrong with me- I don't think the oxytocin is working now."  I was proud that he was able to verbalize it and admit that he felt off-kilter and I praised him for his ability to tell this to me.  I then reassured him that I suspected that the oxytocin was not absorbed due to his choosing the petroleum jellied nostril and that we would fix it by giving him an additional spray this afternoon.  Apparently, he was able to calm down for the rest of the afternoon and had a good rest of the day.  He received another dose today when he returned home and we will see if and when he has a therapeutic effect to today's dose.

In truth, it is hard to be sure what actually happened.  My strongest hunch is that the spray was not absorbed into the nasal passage due to his application of petroleum jelly but I don't know that for sure.  The therapeutic dose of his oxytocin (to date) is very strange- I don't understand how a hormone that has a half-life of 20 minutes (or less) can last in the CNS for 3 days...! This is truly an endocrinological mystery I am unable to explain.  Of course, we have other fears- is he getting immune to the dose?  Does he need more?  Does he need less?  Does the oxytocin interact with the thyroid dose that is currently being raised so that the increased thyroid dose affects the oxytocin's therapeutic levels?  Who knows??  This is the Oxytocin Experiment, after all, so it is all unknown and not well understood, at least by me.

All we can do is stand by and wait for tomorrow or later to see how Sasha responds to his dose from today.  Please keep us in your thoughts and prayers and keep your fingers crossed for a better day tomorrow!