why now?

Therese, I want to do a repeat EEG, sleep deprived if we can this time, instead of under conscious sedation (chloral hydrate). I’ve read that sleep deprivation can stress the body and show different results. I also want an MRI of her brain just to ensure that there isn’t something else going on, but the way the health care system is here, MRI spots are hard to come by and I don’t think he’ll agree to it. I also work in health care and my friend’s husband is a radiologist so could probably pull some strings if I had to, but don’t think that anything would come out of it anyhow. Our neurologist said that if there was something like a tumor then the presentation wouldn’t only be under fever, and she wouldn’t be developmentally on track and thriving otherwise- there would be other signs in his opinion.

Our neurologist is a pediatric neurologist at Sick Kids hospital in Toronto, though we see him at his clinic near our house. He is pretty young, and is up on the current research, which I like.

We did talk about prophylactic use of seizure meds until she outgrows it, but he said that the literature is strongly against it for febrile seizures, using a risk:benefit rationale. The risk of the seizure meds is higher than the risk of the febrile seizure. The meds can cause hyperactivity, irritability, sleep problems, behaviour problems, and impaired learning. He wanted to try a new treatment approach which is a high dose of ativan (an adult dose) given for any fever over 100 degrees. The problem was that it stays in the system for 24hrs, so if we give it right away, then she has the seizure two days later it’s of no use, and coming off the med was like watching a drug addict in detox.

So… basically we don’t know where to go from here. Maybe we can try valium instead of ativan, I know they’re similar, but maybe she won’t react the same way to the valium. Or maybe there’s nothing we can do, but continue to medicate her with tylenol and motrin round the clock and hope for the best. This is how we’ve been doing it for the most part, but it hasn’t worked terribly well, obviously.

Thanks for the advice.

Thanks everyone. I guess we just need to see what the neurologist suggests.

(HUGS) to you all. I am really sorry that happened.

I just saw this, I don’t know how I missed it! I was just so happy with Hailey’s little miracle! I am so sorry to hear about what is going on with Sarah. Seizures are so scary especially on such a young child! I truly hope the doctors figure something out soon! HUGS!