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! ;)
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
5 comments:
So sorry the Lamotrigine didn't work out for her. I hope the Keppra is better. Have to say, that was one which made my Mog scream and scream, but I know others for whom it's been a lifesaver.
I'm glad you don't have to consider brain surgery; sorry though that there isn't a nice neat explanation for why Peanut has to go through this.
Glad to hear the MRI results, that is good! And I also happy that the rash was caught in time. That was scary for a while.
Can't wait to see the photo, sounds fun!
so happy the rash is getting better. Can't wait to see the pic
Thats so true, I don't know how many seizure meds we've tried with Jax so far. I'm glad the MRI was clean, and I'm glad he thinks they can be controlled with meds. What a relief.
Glad to hear Miss Peanut is doing better! Unfortunately dealing with different seizure meds is our way of life. We are on our third kind but may have to switch to another one soon. :( We are hoping that they find the right cocktail for Miss Peanut.
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