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My 6 year old daughter was recently diagnosed.

Wed, 10/11/2006 - 14:26
HI my name is Brandi I am 28 and live in Maine. I have a 2 year old son Giovanni and a 6 year old daughter Victoria. Victoria was just diagnosed about 3 weeks ago with epilepsy. She had her 1st seizure on August 15th. She was up in her room taking a nap, she was asleep for a while,when my husband came home from work he checked on her again, we ate supper & decided to let her sleep. A while after supper we figured it was about time to wake her up and we heard a bang, like she had fallen out of bed. My husband ran up and then yelled to me. Victoria had fallen out of bed, was twitching, drooling, eyes rolling in the back of her head, and she had wet the bed. We called an ambulance and they medicated her & took her to the hospital. The seizure had lasted for quite a while. They did an CT scan & that was normal. They kept her overnight & eventually she woke up and came to. She did not remember ANYTHING. Victoria had all of a sudden started wetting the bed every so often after being potty trained for a long time, so we thought it was strange. After we & the doctors put that togther with the fact that she also did during the seizure, they figured that she may have been having small seizures while sleeping and that was why she was wetting the bed. So a little over a month later we finally were able to get in to see a pediatric neurologist. They did an EEG which came back abnormal. So they diagnosed her with epilepsy and started her on 200 MG of Carbatrol. Then this past Monday Oct. 9th she had another seizure. I was meeting my SIL to have the kids pics taken with my Nephew. When we left the house Victoria asked me if it was ok if she peed her pants during a seizure, because she always does if she has one. Of course I said yeah & thought nothing of it. Then a few mins later I looked in my rear view mirror and noticed that she was asleep. I thought it was wierd because it was only 9:45 AM, why would she already be tired? So when we got to where we were going she woke up, but was spaced completely out & wouldn't talk or respond to me at all. So I called MY SIL and told her that I thought Victoria was going to have a seizure, she is acting really wierd I am taking her to the hospital. SO she met me over there. I had thing of medication to give to her, but I was told to give it to her after she has a seizure for 3 mins, but she wasn't having an actual seizure so I didn't know what to do, so I went in the ER and told them what was going on. They came out and got her and as soon as they got her into a bed she had the seizure, so they medicated her, have her an IV, oxygen, etc... The seizure finally stopped but she was still unconscious,once we felt safe we were able to bring her home and a few hours later she came to, but again didn't remember anything. I am quite confused. I am thinking that the 15+ minute staring non talking spell was also some type of seizure,that preceded the Grand-mal seizure. I just wonder if I had given her the diastat during the spacing out if it would have kept the grand-mal from coming? So now she is taking the 200 MG of carbatrol 2 xs a day instead of just once. I hope this works, I hate seeing her have a seizure and I hate not knowing when she will have one.....

Comments

Hi Brandi. I am sorry for

Submitted by ekoorb on Wed, 2006-10-11 - 17:18
Hi Brandi. I am sorry for your scary experience. My 5 year old daugther (soon to be 6 in November) was diagnosed with E in February. We go to an E specialist rather than a pediatric neurologist. My daugther's seizures also have occurred during sleep and she wet her bed. The one we actually witnessed (because she sat up in the middle of the night as if she was going to vomit) we could not wake her and she stared off for about 7 minutes. We called 911. It was terrifying. We went to the ER via ambulance and all her vitals were ok. We came home, she slept for several hours and then did not remember a thing. I tell you my story because she was diagnosed with a specific type of E which you should probably look into. It is called Benign Occipital Childhood Epilepsy. There is also another form called Benign Rolandic Childhood Epilepsy. Both forms have a good prognosis because the child is expected to outgrow it in a few years. The only thing I did not hear that is usually commom to these forms of E is the child either vomits or feels nausea or coughs like they will vomit. Type in these forms in the search box to the left to read up on threads on these topics. I would highly recommend you finding an E specialist. My daughter is on 15 mg of Topomax which she takes each night before bed. I hope this helps. If you want to meet in the chat room, let me know. Take care.

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