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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 e_nuffofthis on Mon, 2004-11-22 - 19:29

Hi Pink:

Yes, I've heard and experienced this myself with my child.  He has partial seizures, however, but I don't think you should wait two weeks.  You should call and let them know what is going on.  They may want to increase the medication.  Have you had levels done yet?  If not, maybe you can question if they want to get that done now.  The first route they usually take, as long as there is "room" (level not too high), is to increase the med.  If that doesn't work they may try to add another med or to try something else.  It's important to gain control as quickly as possible so that things don't get out of hand and she does not have another GM. 

Hope things go well.  Hugs.

Hi Pink:

Yes, I've heard and experienced this myself with my child.  He has partial seizures, however, but I don't think you should wait two weeks.  You should call and let them know what is going on.  They may want to increase the medication.  Have you had levels done yet?  If not, maybe you can question if they want to get that done now.  The first route they usually take, as long as there is "room" (level not too high), is to increase the med.  If that doesn't work they may try to add another med or to try something else.  It's important to gain control as quickly as possible so that things don't get out of hand and she does not have another GM. 

Hope things go well.  Hugs.

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

Submitted by jackieoh on Tue, 2004-11-23 - 10:55

Hi! 

I am sorry to hear about your daughter, I have experience from both my sister and husband as well as many children in my school (I teach children diagnosed with autism and they frequently also have epilepsy).  They both tap out on medication after a while.  That is, the medication needs to be adjusted, for my sister this usually works for my husband once he has a seizure on any medicine it doesn't matter how much he is on he has to change to a new medicine because it will no longer work for him.

I think you may want to consider finding a comprehensive epilepsy center in your area.  I am not sure where you live but in New York there a few good ones.  They specialize only in epilepsy and related things.  Since my husband has found NYU comprehensive epilepsy center he has never done so well.  As a matter of fact he had brain surgery on September 27th and has been doing well since.

I wish you a lot of luck and agree that you should call the neurologists office immediately, do not wait for your appointment.

Good luck.

Jackie

Hi! 

I am sorry to hear about your daughter, I have experience from both my sister and husband as well as many children in my school (I teach children diagnosed with autism and they frequently also have epilepsy).  They both tap out on medication after a while.  That is, the medication needs to be adjusted, for my sister this usually works for my husband once he has a seizure on any medicine it doesn't matter how much he is on he has to change to a new medicine because it will no longer work for him.

I think you may want to consider finding a comprehensive epilepsy center in your area.  I am not sure where you live but in New York there a few good ones.  They specialize only in epilepsy and related things.  Since my husband has found NYU comprehensive epilepsy center he has never done so well.  As a matter of fact he had brain surgery on September 27th and has been doing well since.

I wish you a lot of luck and agree that you should call the neurologists office immediately, do not wait for your appointment.

Good luck.

Jackie

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

Submitted by Becki on Wed, 2004-12-01 - 11:09
Hi, my name is Becki . I have a four year old daughter who was diagnosed with partial,clonic tonic ,myoclonic seizures. She has been on a handfull of meds... Dilatin,Depakote,Topomax,Keppra,Lamictol and Zonogran. All of these meds. worked for about a week or two, and she would be back on square one. They are now going to try a med that I can only get in Canada. If this med doesn't work then they are going to put her on the Keogenic diet. The only advice that I can think of is that you know your child better than anyone else...Fight until you get the results that you need. There are plenty of other meds that they can try for your daughter.. It is very tiring , but if another will stop the seizures it is all worth it ..Never give up there always something or someone who can help.Becki

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