Friday, February 17, 2012

Good News Day

We got the results of Allie's MRI today: no change!

No change means that there are no other noticeable areas of concern, which is a great thing. They forgot to do the MRA, which is the part of the test where they measure blood flow in her brain (don't you hate it when that happens?) but Allie's neurologist does not want to have Allie re-sedated to have the MRA done. She said that Allie's previous MRA was "beautiful" and she didn't expect to see any change in it anyway, especially since the MRI looks so constant. One minor area of concern was that Allie's white matter in her brain is a little smaller than how it should be, but this type of shrinkage is very common on ACTH and should return to normal pretty quickly once she is off of it.

Jonathan also took Allie in for a follow-up EEG and everything looked really good. The neurologist was able to stop by and give Jonathan a preliminary reading and said that things look "much better than the 23-hour EEG" in that there was no obvious seizure activity. Allie's EEGs are not as straightforward as a typical brain. Abnormalities will always show up because of the damage from the stroke so things are not always easy to read. These EEG results will get a thorough look over to make sure that the preliminary results are as great as we think they are.

Allie has now been seizure free for 8 days. She is 2 days in to the ACTH wean. The schedule goes like this:

2 weeks (Feb 2-16): 0.4ml 2 times per day
3 days (Feb 17-20): 0.3ml once a day
3 days (Feb 21-24): 0.2ml once a day
3 days (Feb 25-28): 0.1ml once a day
6 days (Feb 29-Mar 5): 0.05ml every other day

And then we are done!

Starting in a week (assuming the seizures don't come back), we will be reducing the Topamax to a lower dosage. Right now, Allie's dosage is pretty high and we want to bring it back down to "normal" range. I'm hoping that knocking out so much of the medication will help bring Allie out of her fog. She has been a bit of a zombie baby lately.

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