Hi Janet,
I'm going to answer these in order, so see below!
My Questions:
1.. The Doctor said that he will probably not outgrow the seizures. (How does
she know?) Doc says he has failed 3 medications and If you fail three you are
likely to fail the rest. (Is this true?)
Probably not--most kids don't if they start around puberty. It's just the way it is. Only babies do.
2. Does anyone have any neurological episodes like my son is currently having?
I have complex partials, but nothing like this!! Mine started @ age 7, but weren't like this.
3. Are they migraines or seizures? The doctor is now sure they are seizures
but she was sure before that they were migraines.
He may have both. Has he had an EEG? A Video EEG?
4. Has anyone had seizures that changed in the manner of their presentation
over the years?
Oh my goodness yes!! Constantly! I'm the poster child for Brigham and Women's in Boston :) My neurologist used to tell me I've had every kind he's ever seen.
5. Although right now I have no intention of cutting a hole in my son, What are
the statistics for success with the VNS?
That's one option I haven't done yet, although it was given to me. It's supposed to be great, and I'd love to be a bionic woman. For complex partials, I think it's supposed to work really well--you only replace the battery so many years. It really is my last option.
6. Do you think these things are migraines or seizures?
I think he might have both, but I'm not a doctor.
7. Has the presentation and symptoms of your seizures changed over the years?
8. What is the success rate of the VNS. The loiterature says that it "May"
help. I would like to see some statistics that will make this an option due to
high success rates.
9. Has anyone failed 3 or more drugs and been successful with future attempts
to find the right medication
Well, usually if you have 2 medications, adding a third doesn't always help. Now, that's taking them at the same time. I think this is somewhat true--I've been on Topomax (ughhh), Trileptal (currently), Zonegran (currently), Keppra (before, which was good), Depakote, Lamictal, and Tegretol. Now, you only take certain meds for specific types of seizures. Keppra wasn't out when I was diagnosed, so that's why I switched, plus it offered better control. There are a lot of things to consider--I didn't need to eat with it; but after this exhaustive list, I was ready to do the VNS. On top of this, I also take hormones, since mine are also triggered by that.
10. Should I be going to another big city to find another doctor to
consult?Thanks you - Jan
In my opinion, if you can, yes! Just because that's where the doctors are :) But I have access to Boston, which is full of doctors.
elizabeth
If you can find a path with no obstacles, it probably doesn't lead anywhere.
- Frank A. Clark
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