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On the road to recovery!

Posted Nov 11 2009 10:02pm
I took Peanut to the neurologist first thing Monday morning, after her already scheduled renal ultrasound. He said that he only sees a Lamictal rash 3-4 times a year, and hers was the worst he has EVER seen. He said he really thinks we were thisclose to Steven Johnson Syndrome, and he was relieved that I took her to the ER when I did. Ugh! Me too. The steroids are doing their job, the rash is a ton better now.

He said that it can last up to 3 weeks! Even when it looks like it's gone, if she gets hot or cries hard or something it can pop back up.

He put her on Clonazepam for a couple weeks. It's a seizure med but most kids build up a tolerance to it and have to keep upping the dosage, so he doesn't like to use it long-term. The good thing is that it doesn't have a rash as a side affect, so it's safe to use now while she does have the rash.

Once the rash is totally gone, we are going to put her on Keppra. We will wean up to a full dose over three weeks, and then wean off the Clonazepam. He said it's really common for people with epilepsy to have to try numerous anti-epileptic drugs before finding the right one for them.

The MRI results were negative for any growth, lesion, or cyst on her brain. This is FANTABULOUS news! It means no worries over what it is or how to take care of it or contemplating brain surgery. Hurray!

This does mean however that her epilepsy is idiopathic, meaning it has no known cause. He actually said that is the best type of epilepsy, because you don't have to consider brain surgery. He also said it's usually controllable by medication, once you find the right one.

So we're just hanging in, waiting for the rash to go away. Enjoying our day off today for Veteran's Day. Getting ready for her big party on Saturday, which is going to be made harder since our nurse just cancelled for tomorrow and Friday.

I have a great photo to post later of Peanut enjoying some sensory play. Let's just say it was something smooshy, which she hate to touch normally. Evidently though this was okay to touch and smear. LOL I'll leave this post on that note! ;)
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