Something we noticed a couple of days into Topomax was that she went back to holding her breath for approximately 20 seconds at the beginning of her seizure. She did this on previous medicines before she started Trileptal but when she was on Trileptal & Clobazam alone she would breath fairly normal throughout the entire seizure. So holding her breath again while on Topomax concerned us greatly.
Tried calling her pediatric neurologist Friday but he had a short day that day and didn't return our call Monday morning so I called again yesterday but he was out of the office so we talked with him today. He believes that Topomax would have shown some seizure activity decrease by now if it was going to at all. SO, we are taking her off.
It's a slow wean process of Topomax so she doesn't have withdrawl seizures. She will go down to once a day tomorrow and remain on that dose for 2 weeks and then be off all together.
She has no room to go up on the dose of Trileptal right now but we can call her pediatric epileptologist down at Cook Children's Hospital to order a blood test and see where her levels of Clobazam stand. If there is room to go up we might try that since Clobazam controlled her seizures for 17 days when she first started it.
We have scheduled her to start the Ketogenic Diet in August at Cook Children's Hospital and we're eager to give it a try even though it will involve a lot more than any medicine has. That can be a whole other blog post though! And I'm far too tired for that right now!
Positive notes:
I have a good feeling about the Ketogenic Diet
Rayleigh is sitting independently for a couple of minutes at a time
Her balance is improving when sitting & she corrects herself when starting to lean
Rayleigh cut 2 new teeth
She's tracking objects & watching toys very well now
Rayleigh's smile lights up the world
