Wednesday, April 14, 2010

Test results and change of meds

This is all for Merlin's seizures again, but it does affect his DM. His bile acid test came back bad- this test measures whether or not bile acids, which are produced when you eat, are recycled by the liver after the meal. If the liver is having trouble, the bile acids measured two hours after a meal will still be high. If it is really in trouble, they will be high after fasting. His were high after fasting, so he has to go off phenobarbital.

Now, since he has to go off fast, he'll get a loading dose of KBr. KBr can take 3-4 months to build up to an effective level at the regular dose, so a loading dose builds it up more rapidly. The problem is, that also means lots of side effects, which can include ataxia and nausea, while it is building up. So he may feel a lot worse before he feels better, and the big questions will be does the KBr control his seizures, and after he hasn't felt good for a month is he going to be able to get back to walking again?

Right now he is pretty immobile. I took him for a block yesterday basically holding up his front and pulling him (he didn't want to walk) and I've been carrying him out to potty. (I keep the four-wheel cart outside and just put him down in it.) I'm going to hope he isn't too ataxic and feels up to walking at least a little every day so we don't lose too much, and if he does lose it, hope that being up in Washington in five weeks will inspire him to walk a bit more. I doubt the four-wheel cart will work up there on the dike so I'll either have to help him a lot in the Eddie's cart or take him in to Langley to walk on the sidewalks.

I'm going after work today to pick up the KBr and get him started. After a week we'll drop the dose of phenobarbital and keep our fingers crossed about seizures.

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