Quote:
Originally Posted by Stocky
Hi, I just "joined" . My daughter who is 7 was diagnosed with Epilepsy/generalized seizure disorder about 4 years ago. Her seizures are 99% under control, they are usually brought on by a fever and a quick spike in the fever.
She is on Lamictal twice a day 50mg each, Aderal 5mg once a day and Diazapam 2mg twice a day.She has sensory issues as well, hence the other meds.
Very recently she started complaing about an odor. Mind you she's 7 and she really can't describe it but she says " daddy it smells" . There have never been any seizures folowing the "odor" until yesterday.
Just after the smell she had what seemed like a seizure, and she was post-ictal for about 30 minutes .She slept in my wifes arms on the couch.
After she woke, somewhat groggy we went upstairs to take her temp. She was barely running anything, but we medicate with Tylenol and Motrin overlapping every three hours to keep the fever down. So as a precaution we were about to give her Tylenol when she seized again ,this time for 7 minutes ! She usually is 30 sec to 1 minute max. This was scary ,she turned blue and we called the ambulance.
Blah, Blah Blah.... The doctors know us in the ER and it was the usual routine etc.. to check her out.
She is 100% fine today. The odd thing was that the fever never registered above 100.0 . That's REALLY low to cause a siezure for her.
Do you guys think that the "smell or odor" is an aura that is preceding the seizure ?
Also, our neorologist at CHOP had not heard of the "odor" thing before.
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Stocky,
Hello and welcome!
I fully agree with Sue on going to an Epileptologist (moreso as the Neurologist isn't familiar with the odor thing). I was curious if they have done other testing on her? I'd suggest getting in to see a Cardiologist, Immunologist and Hematologist along with the Epileptologist. It may seem weird, but all 3 can do some extensive testing that could rule out or diagnose things that can be causing the fevers and/or seizures.
I'm curious as to how frequently she has high fevers. I also worry greatly about the duration of her seizures.
I would suggest going to an Epileptologist (with the epilepsy diagnosis, you wont even need a referral at most places). I think you'll find yourself pleased with their advanced knowledge when compared to a Neurologist. I'm willing to bet they will send you around to other 'ologists' for workups/tests to rule-out other things.
To clarify, I'm not questioning if she has Epilepsy, I'm thinking the fevers should be looked into as well. With her being so young, it's hard to have her explain things so she could potentially be having other seizures that aren't picked up on as easily (with or without a fever).
When I am upset, tired, stressed, etc. I will run a fever (can get as high as 103, and I'm 30). My son ran very high fevers (no seizures) and I ended up having to go to the above mentioned 'ologists' to have him tested, and later - myself. They told me frequent high fevers can cause scar tissue on the heart - and constant treatment of high fevers (tylenol and all of that stuff) can cause ascites(sp) on the liver (i think it was the liver, lol).
I've had lots of tests to see if my symptoms were a part of my epilepsy or enough to cause a bit of stress to trigger a seizure. I've got some mild heart problems, my immune system is kind of weak - but none of that is related to my epilepsy. However, they try to control it as it can trigger a seizure (stress, pain, colds and periods are my top triggers).
Hopefully that made sense, I'm sleep deprived and only had a cup of coffee so far so I'm still loopy.
Please, please keep us updated and stay in touch.
