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I'm new and need support.....

Thu, 12/02/2004 - 07:24
Hello, I'm new here and need to vent!Last March my husband, 8 year old daughter and I were in the car heading to church. Our daughter started kicking the back of my seat and I had to tell her three times stop kicking before I looked back at her. As I'm sure you figured it out, she wasn't kicking the seat, the was having a grand mal seizure. Of course we called an ambulance. The doctor at the hospitol was great and explained that she was fine, she had only had a seizure (well....he was fine with it, I was a mess!). Anyway, to make a long story short, he asked if we had ever noticed her to have a blank stare or not always paying attention. My heart sank because we had but thought it was just a normal childhood thing, kids get distracted, right? We promply made an appointment with the pediatrician, who did NOTHING in the way of listening to us nor did he in any way help. To the contrary, he told us we were over reacting and that there was nothing wrong with our daughter. We had a waking eeg, which came back normal. We continued to have staring spells, sometimes several a day. Still, the pediatrician said we were over reacting. July rolled around and my daughter had another grand mal. We called the pediatrician and he in turn sent me a letter saying he would no longer treat my daughter because we had breached patient/doctor trust (guess he thought we were lying!). In retrospect, I can say this is the best thing that ever happened to us!We saw another pediatrician who scheduled a sleeping eeg, which came back normal. Her staring spells continued, even seemed to get worse. August came, and so did another grand mal, this time lasting almost four minutes. We had a 72 hour eeg and finally had our proof! In a three day period, our daughter was having dozens of absence seizures a day and one grand mal in her sleep, which we would never had known about had it not been recorded. This information was immediatly sent to the ONLY pediatric neurologist in the area. She was diagnosed with CAE and prescribed Keppra. The Keppra was nothing short of a disaster! She was having clusters lasting 20-30 minutes a time and had two grand mals in three weeks. She was taken off Keppra and started on Depakote. We let a huge sigh of relief when after she was weaned completely from the Keppra and the Depakote was absorbed in her system, the seizures stopped. It was amazing! She wasn't as frustrated and was happy. Her school grades have always been good and considering what this child was going through for who knows how long, that's a miracle in itself! However, things seemed to come easier for her, things like math and problem solving. It was as if I had been introduced to my daughter all over again!Here's my problem, my daughter has been on Depakote since the beginning of September and intially, the results were quite good. However, she's started having absence seizures again within the last week. I think she may have been having them before last week, but I wasn't sure and I didn't want to be super sensitive and assume that is what I was seeing. We haven't seen the Neuro about it yet, but we have an appointment in another two weeks. I'm sorry this is so long, I just need to get this out! Has anyone here had a child who was using on medication which worked for a while and then didn't? What will happen next? I'm so frustrated right now. We imagine our kids falling and breaking an arm, being bitten by a dog, or the absolute worse, being hit by a car. I never once thought my child would have epilepsy. She was doing so well and now I see us starting back at square one. I just got her back and don't want to lose her again.Thanks for listening.

Comments

RE: I'm new and need support.....

Submitted by jimmy on Thu, 2004-12-02 - 07:24
Hi my name is James and I have epilepsy. I got diagnosed when I was 15 years old and I am now 30 years old. I have been on depakote for the past 15 years and been siezure free for 9 years. For the first six years I was having 20 seizures a day. It is going to take time. You daughter is no different than anyone else with epilipsy. It is what we have not who we are. We can live very productive lives. I will pray for your daughter. Anytime you want to email me, email me at jpolaro@mail.nysed.gov  God bless you.

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