Child with Epilepsy... How do you cope? Scary and overwhelming...
Hi all! Im Machelle & just joined. I am a 28yr old single mother of 2, one child with numerous disabilities including Epilepsy. He has suffered Grand Mal seizures, Cluster Seizeres and often Petite ones. He takes Topamax(100mg in a.m. and 150 in the p.m.) He has been on it since age 3(first seizure) and has never had to try any other med(thankfully). He has gone 4 1/2 yrs without a tonic clonic and cluster seizure. But just the other day he woke up right after going to sleep(10 minutes)and begin calling for me. I just could not understand him! He was slurring his words tremendously and the right side of his face lossed function. He could understand everything I was saying to him and could do the things I asked but just couldnt talk right. i was never told anything about a POSTICTAL STATE and it happens right after a seizure. I did not even see him having a seizure bc he was just laying there on his side asleep!(i was in the same room). I was horrified and dialed 911 after 5 minutes. The nurse and physician at the ER made me feel embarrassed and stupid due to them telling me it was just him either hallucinating(which topamax can apparently do, even though he has been on it for 6yrs and no issues except short term memory), or he was dreaming. WTH?! Really?! I called his neurologist the next morning and she had him come in right away( Nationwide Children's in Columbus,OH). Thats when I learned for the very first time of Postictal Events/state... Interesting. But scary for the first time. She said it was probably due to the fact that he was just getting over the flu(he has never had a seizure when ill, even with pneumonia and H1N1). He is good now. They up'd his doseage. But now he is sick again with a cold. Im really praying this does not happen again. Has anyone else encountered this ?? Any advice please?
Thank You Tremendously!!