Wednesday, December 1, 2010

long time no blog



We've had a busy couple of weeks. The Clonazepam wean is going well. We will drop his evening dose to 1/4 pill on December 10th! Oliver had 2 seizures before the wean even started and 3 since the wean but overall they are shorter and less intense. We closed out the month of November with only 7 seizures (clusters of seizures). 6 of them lasted less than 5 minutes and the 7th was a whopper at 15-20 minutes. BUT, they used to last about an hour...so this is a huge improvement and possibly a sign that the diet is helping.

We increased Oliver's ratio to 3.5:1, so he receives even more fat in each meal. So far he is tolerating it well.




We believe the cause of his fussy/screaming fits is mainly GI related and gas. The GI doc said to try sup
positories a few times per week to really keep him cleaned out and gas free. We are also going to be giving him prunes every other day to try and keep things "moving". We split his miralax dose into two parts and have already seen a bit of improvement. I don't think we can get rid of these fits altogether, at least not until he's off the diet and the fat content decreases but that's a long way off. We're going to try and keep him as comfortable as possible and cuddle him as much as we can when he's miserable.

Oliver has been very chatty and smiley lately and we're so thankful and grateful for that.

1 comment:

  1. He looks great! I love that last pic! SO glad things are improving !!!! We had to split Emily's miralax into 2 doses and so prunes every week or so. Hopefully that helps him some.

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