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RuthieG

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Hi,
english is not my native language. I hope you will understand me nonetheless.
My daughter is 3 years and 9 months. She had her first seizure with 11 months. She takes valproic acid (orfiril) twice a day.
She was seizure free for over 2 and a half years. Now the seizures have come back.

I am looking for other parents with children with epilepsy. Secretly I am hoping for a snail mail pal.

And I want to learn about epilepsy in an international context.
 
I Hi RuthieG, welcome to CWE!

We have quite a few parents as members. if you haven't already, you should checkout The Nursery forum here.

I'm sorry your daughter's seizures have returned. What kinds of seizures does she have?

Best,
Nakamova
 
She has grand mals, (she had two status epilepticus). As a baby she also had absences and an atonic seizure. Her grand mals are often triggerd by infections.
After the long seitzure free time we felt pretty secure, but now I worry constantly.
 
Was she on the valproate during the 2-year seizure-free period? Was the dosage upped after the recent seizures?
 
Yes she is on valproate since her 4th seizure when she was 11 months. We upped her dosage now and then (after blood tests). Now she had two grand mals after the seizure free period and we increased the dosage twice. She got a lot taller and heavier the last couple of weeks.
Her neurologist is thinking about adding a second medication.
Yesterday evening she had some sort of seizure in the car as she woke up from her nap.
 
I hope the neurologist would consider trying a different med as monotherapy before adding a second one to the mix.
 
Yes she does.
But I hoped so far the problem arose from a low valproic acid level in the blood. Now she is back on her old level.
 
Hi RuthieG, welcome to the forum. :hello:

There's no better way to gain an international perspective on epilepsy than to chat with folks on the forum. I've learned a lot about the UK perspective from participating on the NSE forum (though it's been a while since I last visited there, I used to be very active years ago).
 
Bernard said:
There's no better way to gain an international perspective on epilepsy than to chat with folks on the forum.
Click to expand...

Yes, I hope so. And hopefully my english doesn´t get in the way.:roflmao:

Nakamova and bernard thanks for your welcome!
 
Last edited by a moderator:
Hi Ruthie,

Welcome to CWE form another European mom. I'm from the Netherlands, where do you live?
My son who's allmost age 12 has a nasty type of epilepsy.
He was on Orfiril long time agon (no succes), he's on te ketogenic diet for 7 years now.
Don't worry about your English, they do understand me here so they will understand you too. ;)
 
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