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6 year old daughter with Post-Encephalitis Seizures

My daughter had encephalitis in February 2003, and has had hard to control seizures since then.  She was in the hospital for two weeks, she was home for two weeks and then went back in for an entire month due to Dilantin drug fever and seizures.  We were finally able to go home when when she went for 48 hours without a seizure.  We have been through all the medications, she has been on combinations, usually on three at once, now she's on Trileptal, Depakote and we just started Lamictal about 2 months ago.  She has been hospitalized (ER visits, EEG monitoring) several times because of the seizures (she tends to cluster and has several on the same day - we now always have Diastat with us - I have had to give her Diastat every week for the past 2 -1/2 months. ) We met with our Neurosurgeon on Monday and she is now scheduled for Epilepsy Surgery next month - of course, we are terrified, but are anxious to have her life (and ours) restored to some type of normalcy.  She missed about 40 days of school last year and has already missed about 10 days this year... I guess I'm wondering if anyone is having similar experiences with their young child...it would be nice to chat with someone who understands what it's like to watch your child go through this and the toll it takes on mom too...although my family is wonderful it's hard to listen to "you're not really going to go through with the surgery are you?" or "you shouldn't do it" . 

Comments

Re: 6 year old daughter with Post-Encephalitis Seizures

My son also has Post-Encephalitis Seizures.  The viral encephalitis occuring in 7/06.  Please contact me.  I would love to talk with you.  God Bless, Val Clark

Re: 6 year old daughter with Post-Encephalitis Seizures

 

 Hi there... Wondering how your daughter is doing, and if she did in fact have the surgery? 

 ~Val~

"For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Re: 6 year old daughter with Post-Encephalitis Seizures

I know how you feel our stories are similar. My daughter had her first seizure at 1yr.old and the doctor could not find a cause he said it was due to fever. She didn't have another one until 07 her first one was 23 min. long and she was taken to the ER where they put her in PICU for 7 days they could not get them to stop. the only time i saw her eyes open was when she was seizing.I began to wonder if they would ever stop. She finally got to come home and she would have them only in her sleep then that changed and they happened during the day also. The doctor put her on trileptal and she got a full body rash and a fever that would not go below 102. and the highest was 105.4 that scared me. She was in the hospital for 12 days until they found out that it was the med. She has been on depakote,depakote er, topamax, trileptal, keppra and lamectal.She still has seizures about 1-2 a week. I t seems like everytime it gets better it all hits again I'M SURE you feel the same way.

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