Sturge-Weber Syndrome Community

Full Version: Isy having seizures again
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Last Friday, Isabel woke up at 1 am complaining of a headache. Gave her some ibuprofen, she went back to sleep. 6:41 am, she started having a grand mal seizure that lasted for 5 minutes and 40 seconds. I gave her the diazepam (her rescue med) and about a minute later she stopped seizing. I brought her into the ER, because she was running a fever. Come to find out she has MONO. Shocked They tested her for encephalitis and west nile. Both negative. Her trough level of her carbatrol was on the high normal side. Then Monday night, she had a petit mal/partial seizure, while sitting on my nieces lap.

I am still waiting to hear from her ped neuro as to what the next step is.
Just wondering if anyone here had to change meds because they were inaffective? And how often does it happen to where a child has to be switched.

The dr at the ER thought that she had the seizure because of the MONO. Which makes sense.
Isy is doing better. They upped her meds to 600 mg a day instead of 500.
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