EEGs

He had his follow up EEG and neurologist appointment today after being seizure free for the last six days. All the metabolic tests we did last week came back negative and we're waiting to hear about the genetic tests still - apparently those take longer. BUT the latest EEG came back without hypsarrhythmia (I didn't get to see the picture this time as I was holding Cyrus' hand through the whole thing) confirming that he has not been having seizures this last week. His brain waves are almost normal (there was one slight abnormality when they flashed strobe lights at him - he was not a fan), but much improved. 

We are being weaned off of his medication slowly and then we're going for a follow up EEG again after the medication is reduced to confirm that he is continuing to go seizure free. 

Then we're being referred to Early Intervention (Special Ed services before school) for assessment of his developmental progress.

At home his mood and engagement are much improved - almost back to normal. And I'm sure he'll be his enthusiastic chill self once we're off these pesky steroids!! 

Thank you all for your love and support as we figure our way through this.

Infantile Spasms

So... Cyrus likes to keep us on our toes. Just when Mommy thought we were all going to have a normal relaxing week after school got out, he started having these spasm-like seizures on Thursday, June 12th. These were easily mistaken as an extreme startle reflex, but they were far stranger than that. 

Ouf friend, Eugene, may have changed this little guy's prognosis for the far better by saying something about how they looked like cat seizures. This idle comment sent me to the internets once again where I found videos of other babies doing the exact same thing all diagnosed with a rare form of epilepsy (and by rare I mean 3/10,000) simply referred to as Infantile Spasms or West Syndrome.

Called the pediatrician and she referred us immediately to a neurologist at Stanford Children's Hospital for diagnostic assessments. Unfortunately, I am apparently too good at self-diagnosing. I really really wanted to be wrong. But the next day Cyrus was diagnosed with Infantile Spasms, or IS as it is referred to in the epilepsy literature.

His prognosis at this point is unclear, but with this type of seizure disorder he is much more likely to experience developmental delays, cognitive impairments, and/or develop autism.

He was feeling much better by the end of the hospital stay after he was started on some anti seizure meds! Acting way more like himself again. Now he just has an IV in his head. I actually think the IV in his head was way less traumatic than the IVs in his arms/leg that we had to get put in at his last hospitalization. Though it's a practice that is avoided merely because it freaks a lot of parents out - I highly recommend it to any that have to watch their child go through something like this. It went in so much faster and stayed in so much better. And it didn't seem to bother him nearly as much.