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Normal Tests, do nothing?
Fri, 04/13/2007 - 11:50Topic: Parents & Caregivers
My daugther Kaitlyn is 23 months old, and will be 2 next month. She has had 3-4 seizures in the month of March so we finally got seen by her Neurologist and told us she was having seizures and gave us Topamax. He didn't tell us what kind of seizures or anything like that, just seizures.
We had the EEG, that came back normal.
We had blood work done, that all came back normal.
So we just got back the results of the MRI and everything looks normal.
I asked the nurse, "Now what? What other tests do we do?" and she replied "Nothing we might never know" that just doesn't seem acceptable to me. I mean it's different to not know what is causing them, I understand that some are unexplainable. But I want to know what kind of seizures, I want to know what is the best treatment.
So now what do I do? I still haven't started the medicine because I don't know which is the lesser of the two evils. She doesn't have real bad seizures or long ones for that matter, the two came after trying to wake her up from sleep.
Do I start the medicine even though I don't even have a diagnosis. Do I demand some more testing? If so, what testing? I am working a second opinion. It's hard to get them around here, the soonest one with a good hospital isn't unil September.
Just need advice.
Comments
Re: Normal Tests, do nothing?
Submitted by ekoorb on Fri, 2007-04-13 - 15:45
First, congrats on a clear MRI. I assume the docs are still recommending the meds after all the tests. The question to medicate or not to medicate is huge. I am one of those people that has to be kicked in the head by a horse before I like to take Advil. But, when our doc recommended meds because of the possibility that our daughter (6 years old) could have a seizure during the day (her seizures have been during sleep) we followed the docs advice. It was really scary to start it (15 mg of Topomax) but it has been a year now and she adapted to it after a few months. When are your daughter's seizures? Have you sought out a second opinion? Maybe that will be the push to help you make your decision. Have you talked about the pros and cons with your doc?
Re: Re: Normal Tests, do nothing?
Submitted by kaitlynsmom on Fri, 2007-04-13 - 16:40
Thank you.
Yes the doctors are recommending the meds still (just the neuro, other doctor I spoke to is uncertain why she would be on it without exact diagnosis). My daugthers seizures were upon waking up from naps around 3:00ish in the afternoon each time. She has had one episode where she spaced out and was unresponsive (but I hate to call it a seizure for sure). I am currently looking for a second opinion. The soonest one I can get seems to be September, I am starting to think about traveling and seeking a second opinion from a different hospital in general. Her neuro is horrible at explaining things and when I've asked questions he just acts like I'm wasting his time. I have a call into his nurses about it, but they don't usually call back right away.
Your daugther is on Topamax? How did she handle it? They want us to start Topamax, 1 pill at night for 1 week and then 2 pills (1 in am and 1 in pm). I have read some horrible side effects and am terrified.
Re: Normal Tests, do nothing?
Submitted by Mollysmama on Fri, 2007-04-13 - 13:34
I wish I had just the right words to say. My advice to you is to keep moving forward. Do you have a better relationship with her pediatrician? Is so, talk with them. Best wishes always, d