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Newly diagnosed and would love some feedback

Mon, 10/02/2006 - 16:45
Hello! My 5 1/2 yo daughter was diagnosed last week with a "seizure disorder." When I asked the neurologist whether it was epilepsy, she said, "not yet." I'm not sure where to go or whether I need a second opinion, but I'd love to hear your thoughts. The background: Libby had been having headaches all summer long and then had a grand mal seizure 5 weeks ago. Her CT scan, MRI, and EEG were all normal. She told me that as she was regaining consciousness that she could hear but couldn't see or move. I asked her if she had ever felt that way before and she said yes. She described one event to me that I actually remember - I was mad at her for not listening to me and she said that she actually couldn't see, so she had to wait a few minutes until she could see again before she do the task that I had asked her to do. She told the neurologist that she had also had 2 other episodes like that, but couldn't offer any details. She has definitely had a personality change over the summer - she goes through periods of being very, very quiet, maybe even detached, and seems extremely sad. She's normally a very loud, cheerful, bubbly little girl, so the change is very noticeable to everyone. I guess my biggest concern is that I'm a little surprised that the neurologist diagnosed her with a seizure disorder based on one grand mal seizure and only her recounting of other "episodes" and the behavioral changes. She was also diagnosed with unrelated migraines and that diagnosis I totally agree with. She has throbbing headaches centered around her right eye, finds sounds bothersome and wants to lie down with the headaches. We also have a strong family history of migraines. Couldn't the migraine pain account for the behavioral changes? Any thoughts??? Thanks, Steph

Comments

Re: Newly diagnosed and would love some feedback

Submitted by tchaide05 on Mon, 2006-10-02 - 20:34
Steph, my daughter was diagnosed with E last feb. She had her first grand mal in july of 05, then two more in feb of 06, I also noticed alot of personality changes when she was going through this. But once she got on medication she straightened back out. You did not say, but is she on any medication for the seizures? also migraines could be a part of the seizures. My daughter also had eeg, veeg, mri, and all the other tests and everything came back normal. Does your daughter know what is going on with the seizures? Please feel free to contact me anytime, I am not an expert at this by far, but I am a mom also. and realize how hard it can be. Mom to Lauren age 9,

Hi Stephanie. I am sorry

Submitted by ekoorb on Tue, 2006-10-03 - 21:33
Hi Stephanie. I am sorry you are going through this rough time. My 5 1/2 year old daugther (turns 6 in November) was diagnosed with E back in March. As a lay person, my understanding is the definition of E is having two or more seizures. When a child just has one seizure, that is not epilepsy but when a child has 2 or more then a doctor can diagnoses it as E. That does not mean that after a second one, a child will ever neccesarily have another. As to the doctor saying "not yet," she may be saying this because she is not positive there has been a second seizure. Although lots of times, when determining whether or not a seizures occurred, the doctors must rely on the information/observations of a parent/child. I would keep a log book from here on out. Are you seeing a general pediatric neurologist or an epilepsy specialist? We first saw a general one who had horrible bedside and we switched to a E specialist and he changed our lives. All he does is see children with epilepsy. He has been incredibly helpful. I would go for a second opinion to a pediatric epilepsy specialist. Did your current doc put her on medication? I don't know about migraines, but the meds definitely could effect her behavior. My daughter is on a low dose of Topomax and it was an adjustment and she was sad, impulsive and tired in the beginning. If you want to chat in the chat room, let me know.

Re: Hi Stephanie. I am sorry

Submitted by Stephanie007 on Thu, 2006-12-21 - 03:22
I'm just coming back to this site. Thank you all for your thoughts. Libby did have a second tonic-clonic seizure last week, even though she's been on Topamax since October, so clearly it is epilepsy. The neuro increased her dose, so I hope that helps! Looks like I need to educate myself and start reading a lot more.

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