Tuesday, April 30, 2013

questions and maybes

Yesterday was a Dr. MacDonald day:  we took Jonathan for his regular six-month checkup with the pediatric neurologist who monitors him for seizures and anti-seizure medication.  Actually, this wasn't quite a regular checkup; we'd moved up his appointment date because in the last two months he's had two or three "absence" seizures.

In the last instance, which occurred three weeks ago, we had just come back from Jonathan's dental appointment, which had gone very well, and he was sitting on the floor doing a jigsaw puzzle.  He was kind of grumpy about being denied his usual cheese-and-crackers snack because of the dental freezing.  Then Richard spoke to him about something and he made no response but just stared into the distance.  His pupils were dilated, and his body was stiff  so that we couldn't lie him down.  This lasted about a minute or two; then he slowly began to come around:   I asked, "Jonathan, are you tired?" and he said, "Tired," in a dreamy voice.  Then he asked about the cheese and crackers again, so we knew the seizure had passed.  He was sleepy, though, and when we suggested he go to bed he agreed, even though it was only 5 p.m.  He woke up about three hours later and was completely back to normal and hungry for the supper he'd missed.

The appointment today was good; yet, as we've learned in the several years we've been seeing Dr. MacDonald, there are always more questions and maybes than definitive answers.  Did the absence seizures happen because one of his medications was eliminated back in November?  Maybe, maybe not.  Is he outgrowing his current dosage of the one medication he still takes?  Probably not; his weight hasn't changed much since last summer.

Interestingly, the blood work Jonathan had done in November shows that he has a deficiency of carnitine,  which is a compound made of two essential amino acids (hmm ... that sounds like an advertisement for cereal).  Valproic acid, the antiseizure medication Jonathan currently takes, can reduce carnitine production and have some toxic effects on the liver, so the doctor would like to try carnitine supplements.  Will this help with the seizures?  She's not sure; it might.  So that's what we're going to try.  We will see her again in four months -- unless he has another seizure episode, in which case she wants us to call her and she'll look into setting up an EEG.  He hasn't had one of those since 2004, and in that instance a sedative was used to put him to sleep; she would like to get one without sedation, but the idea of him lying still long enough to allow the electrodes to be patched on and a good reading taken hasn't seemed very realistic up to this point.

So we continue to take things one day at a time -- not that we have any choice!  But after all this time we've realized certainty is unlikely.  Taking the next step that's presented to us is all we can do.

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