Thursday, 24 October 2013

Two Steps Forward, Twelve Steps Back

None of us ever wants to find out that something is actually working because we have to stop it.  Unfortunately, that is what has happened in our house these past few weeks.  Nathan’s mitochondrial cocktail was getting stickier and clumpier by the day.  I spoke with the pharmacist at the compounding center and he told me to take it out of the fridge.  I did so.  It got much much worse.  It was basically damp, smelled rank, and there was no way it was dissolving in any liquid because frankly it seemed saturated with liquid as it was.  I emailed my contact again, expecting to get another “tip”, but he responded, saying that he had just opened the new batch that he had made to ship to us and found the same issue.  He looked up each of the components in the cocktail and found that it was the L carnitine that was causing an issue- it tends to cling to moisture.  There were two options- take it out of the compound and give it separately (we already have it at home, as that is the one part of the cocktail he was already on) or attempt a liquid.  The liquid would need to be shipped every other week, making the copay double, and shipped on dry ice which is a $27 charge each go round.  Thus, we are trying the new powder.

The good/bad news is that we have noticed a significant difference in Nathan in the time he has been off of the compound.  His stimming is literally through the roof, and as a result we are getting fewer words as well.  He is pulling the hair off the dog, just to watch it float to the ground, and his fingers are constantly in front of his face for further stimulation.  He is ripping paper like a little fiend, and dangling the chain he creates in front of his face.  It’s hard to watch to be honest.  My other concern is that we finished the 3 courses of fluconazole to treat his yeast recently- so if the yeast is returning, that could cause the increase in these behaviors as well.  I picked him up from Cisco the other day and one of the employees commented on how “giggly” he was.  I had to rain on the person’s parade and let them know that when he is sitting by himself laughing uncontrollably, it’s usually a bad sign- could be yeast again.  So I am watching that closely as well.  Right now the priority is the cocktail, and if we don’t see improvement with that, I will call the developmental pediatrician about the fluconazole issue.

Another biggie- tomorrow is Nate’s D day.  He will be starting Aricept.  NIH has continued to be fabulous to work with, they overnighted the drug and we got it on Tuesday.  I am anxious to get going and nervous at the same time.  I can’t take another disappointment right now to be frank.  Watching Nate backslide these past few weeks has been hard enough.  Jack has been having a whole other set of issues, which I will address in a future post- preview- he doesn’t want to do his work, oh and he is pushing a girl.  A lot.   Should I be viewing this as social progress??? Mommy needs a sensory deprivation tank!

Nate's stimmy fingers yesterday....

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