My daughter has been uncontrolled for all of her 4 years, we have now been advised that she can either have an increase in her Topamax or have the epilepsy surgery.
My impression is that the surgery, if successful, will stop all seizures & no medications, due to her lack of development & bad behaviour issues, I am hoping for the surgery.
Does anyone else know about this or has been through this process?
What kind of surgery is your doctor recommending?
Hi Natalie--
How much Topamax is your daughter taking? (I'm just curious because my daughter is on a very low dose and still hates it.)
What kind of surgery is the doctor recommending? I think I saw in one of your other posts--or maybe your introduction--that Taylor's seizures are well-localized to one area of her brain, so is your doctor suggesting a VNS or another kind of surgery?
Annie
Medication dose's
Hi Annie,
Taylor is on 75mg morning & 50mg night - she also has 7ml Epilim morning & night, which I mix with the Topamx to get it down. I had much trouble getting Tay to have the Topamax & I used to mix it with a bit of jam and bits of her food - which was trouble because if you gave it to her before she had nearly finished the meal she would refuse the rest of it.
Our chemist advised that we could mix it with her Epilim as we were giving it to her the same time anyway - which worked for us, as she doesn't mind the Epilim syrup. But we were advised that if she started to have break-through or more frequent seizures to stop mixing it - luckily neither happened to Tay.
I haven't been told the name of the surgery, just described as Epilepsy surgery, cutting the affected part of the brain out, in order for the brain to manipulate itself to take over the functions removed & stop the incorrect signals from being emanated & hopefully no more seizures!
Hope this helps, Nat
Surgery
Her doses of Topa are much higher than Sarah's. Even on Sarah's tiny dose, she thinks her brain doesn't work as well as it should.
I'm a med tech, and one thing I know about lobectomies is that people often have to relearn certain things after the surgery (what you talk about as other parts of the brain taking over the functions), so physical and speech therapies are probably givens for Taylor. I think kids, though, usually rehab more easliy than adults.
The thing I'd most want to know is where in the brain and how big is the area that the doctor would like to take out. You can sometimes tell what difficulties she might have after surgery by knowing if it's near the speech center, for instance. If it's a really big area, they might not be able to remove all of it, which means that seizures might not go away altogether. Even so, she might be able to come way down on the doses of her meds.
Annie
Questions to ask about
Thanks Annie,
I know that Tay's is only a small area, but it is good to know what sort of questions to ask about, especially regarding the therepay's & area's that could possibly be affected. Taylor is already in physical & speech therapies, so I guess that's one good thing, I don't have to go organising more of those sorts of interventions for her.
Thanks very much for your advice & support, it is greatly appreciated. Nat