Good day group. Thanks so much for adding me!
My son is 8 years old with a complicated medical history. He had a stroke in utero, cause officially unknown, although I had a bad car accident when I was 6 months pregnant. His stroke was on the right side of his brain, mainly in the parietal lobe, but all structures on the right are smaller than the left. He began having partial complex seizures at 18 months old, which are well controlled with 2 medications, Carbamazepine and Clobazam. He has a left sided weakness, learning delays and immature social skills, but he is a happy, amazing kid.
Two and a half years ago he had his first ataxic event. He had had 2 seizures in one week (very rare) and his neurologist increased the Carbamazepine (Tegretol) after each seizure. He woke up 2 days after the second increase unable to walk. He crawled out of his room. When I picked him up he couldn't stand up, got very pale then vomited. He COULD talk but sure didn't want to. He couldn't really explain how he felt, but he looked like he was dizzy. The ER neuro chalked it up to a medication overdose.
The same thing happened on January 8th and February 5th of this year. There were no medication increases although he was taking a generic form of the Clobazam at that time.
It took him 5 weeks to fully recover (walking) from the Feb 5th event. The only common denominator is that he asked me for water in the middle of the night all three times and that he seemed unwell the days before the events.
He was diagnosed with bacterial pneumonia in the hospital on Monday. It hit him pretty hard. He began taking Amoxicillan and Tylenol, in addition to his seizure meds, on Monday night. On Tuesday night he was unable to walk, then vomited all over the floor. The Amox seems to make him lethargic. He is feeling much better today and is walking, although very unsteadily.
He has been tested for metabolic disorders and EA2, which have come up negative. His neurologist is calling the episodes migraines until we have more to work with. He had an MRI following the first episode 2 years ago and there were no changes in comparison to the MRI he had as a toddler. He is supposed to be getting another MRI in the next few months but the neuro isn't pushing too hard for it because there was no change after the first event and she says his symptoms don't fit something structural.
Does this situation sound familiar to anyone? We have no family history of ataxia, but a long line-up of migraine sufferers and some relatives with epilepsy.
If you gotten this far, thank you so much for reading!
Heather, mom to Luka.