seizures for 3 years no diagnosis

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breggieroma

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Hi everybody,

My BEAUTIFUL daughter has been having seizures for 3 years now, and still no diagnosis?
I have gone up and down , read everywhere I could, spent loads of money and don't know anymore.
Just when I think it's gone - it comes back again.
We are now doing neurofeedback - I have found that to be quite helpful.
Anybody got anything to say?:noevil:
 
I'm sorry :(

Sometimes it can take several years. I think I've read the average to be around 5-7. The brain is so complex, as are seizure disorders.

I've been at it for a year so far with little to no improvement. Hang in there, stay here!! You will find a lot of supportive people here. And a place to VENT when you need to, and then they'll build you back up. We know how hard it is. But I know I can't imagine watching my child go through it. I can see how hard it is on my husband.


(((((hugs)))))
 
You have found one of if not the best support forums I've come across.
They will pick you up when your down and offer virtual hugs if needed.
I suffer from it and I don't know what I would do if one of my kiddies had the same condition, I know I can't watch it being acted out on tv, I have to change the channel.

So welcome and have a hug
 
Hi breggieroma, welcome!

What kinds of seizures is your daughter having? And what kinds of docs has she been seeing? Sometimes it take an epileptologist to make the call.

I'm glad to hear that the neurofeedback is helping -- keep us posted!

Best,
Nakamova
 
Hello Bregg,

The hardest part of it all is to find a doctor that really listens and wants to help you. I had to go thru 3 doctors before I started getting help. I went 22yrs before I found that doctor. I hope you do not have to go that long. lol Do some research on dr's in your area and get in there. Do not lose hope, stay strong, and we will be here for you. -Jeff
 
Thank you

Wow, I am so surprised and delighted to get so many responses! Thank you to everybody for your input.

I've been to 2 pediatric neurologists, to homeopaths, chiropractors, GP's, pediatricians, and the last one is the neurofeedback specialist (which to be honest is the one I found to be most humane and helpful!)

She's had drop seizures, atonic-clonic and partial more recently. wow what a ride it's been.

I do not know how to help her - she's only 6 years old. She is more able to explain to me what is happening to her before and after now, but I do not understand fully.

Thank you to everybody's valuable input. It really means a lot.
:star:
 
Hi Bregg,

I went to the University of Indiana hospital and barely got some answers. It actually took a trip to the Mayo Clinic to really get the answers I needed. I do not know if it is feasible for you, but you may want to try a journey there. You get a chance in one day to see everyone you need. And for a six year old they can help. I hope you look into it.

Jeff
 
I agree with Nakamova that sometimes a Epileptologist is the best. Neurologists specialize in all number of neurological conditions, while an Epileptologist focus just on seizures -- they have additional training and experience in this, and usually work with the harder cases. Our Pediatric Neurologist referred our son (now age 9) to one a couple years ago -- I had never even heard of an Epileptologist before then, but we really liked him, and he was quite helpful.

But...with epilepsy...you don't always get answers...with regard to what is the cause, and sometimes not even what part of the brain is involved. Many people with epilepsy don't have much that shows up on an EEG unless they happen to have a seizure when the wires are attached; MRIs often don't give any answers either. However, with children, an EEG can often rule out certain kinds of epilepsies that have characteristics spikes or waves -- so you might know what it ISN'T, but not necessarily what it IS.

The best some of us can hope for is to find the treatment that works best. Sounds like you're having good results with Neuro-feedback. Our son's epilepsy is resistant to most drugs. We have found the Ketogenic diet to be very helpful, and will be happy to give more info on that if you want it.
 
Breggieroma
Actually it is best if they dont come up with a quick diagnosis. Ive been having seizures since I was 19 and am 58 now. Never really had a diagnosis that really amounted to anything. Lots of ideas but never anything official. First the dr's said it was cause of an auto accident that I was in about 3 years earlier and that went on for years....NOW they are saying that I had small strokes when I was younger. Said the strokes were so small that I didnt even realize I had them. I can believe the stroke theory cause they run in my family.....the car accident.....nah...never really did go for that one. It only took about 40 years.....of course the technology now days is better than years ago.
 
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