16yr old daughter with Epilepsy... Advice needed

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djdaz_1985
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Date Joined Jan 2006
Total Posts : 2408
   Posted 9/5/2008 3:14 AM (GMT -7)   
bb's said...
[img]/community/emoticons/eyes.gif[/img] Hi my daughter is 16 years old on July the 17th she was rushed to hospital after her first seizure, I wasnt with her when it happen so I didnt see it. They let her go home that same night, the next day she had another I seen it rushed her to the hospital again by time I got there it was over, they just said there was nothing they could do for them just put her on medicane. The next day she had another so I took her to another hospital we were in there for 5 days they did a MRI, EEG and a spinal tap they didnt find anything wrong, but the neurologist said she was sure it was epilepsy put her on keppra and sent us home. Over the next few days about 5 she had seizures every day. The doctor told us to come back to the hospital were she told us that she didnt have epilepsy she was having (pseudoseizures/conversion disorder) we were shock. She then told us we needed to see a mental health person, so we have been doing that is hasn't seem to help much. She is still having them she gets a real bad headache and then she will have 1 or several they last from 2 mints. to 20 mints. also she is having problems with her legs after them sometimes she cant walk good for hours sometimes days. She isnt able to go to school because she is having so many we are doing home school for now.



Is there anyone out there who is having the same thing or having something close to it today is

September the 3rd so it been 1 month and almost 2 weeks so any coments will be helpful. [img]/community/emoticons/idea.gif[/img]

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djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 9/5/2008 3:22 AM (GMT -7)   
Hiya and Welcome to HealingWell!

Your daughter is about the same age as I was when I first started having seizures so I can understand how it looks and feels from your daughters angle. If she is having "Grand Mal" seizures (Called "Tonic-Clonic" now I believe) then that would explain a lot of your post. Grand Mal seizures (Like I have) sometimes come with an "Aura". (A sensation prior to the seizure) Sometimes the aura can be a sight, a smell, or indeed a headache! After the seizure, I am lucky if I have the energy to talk let alone walk! It can be 3-4 hours for me personally before I can start getting back to "normality".

I am glad they have done and EEG, MRI and tap but am surprised nothing has shown on ANY of them. It sounds like textbook epilepsy to me but then again, I am not a health professional. Have you thought about having a 24Hr EEG or vEEG (Video EEG) done? If she is seizing every day then they are bound to catch something.

Please keep talking to us. Perhaps your daughter would like to join us too?!?! idea

Darren
Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
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hugalot
New Member


Date Joined Sep 2008
Total Posts : 6
   Posted 9/5/2008 9:44 AM (GMT -7)   
Hi I have the same kind of seizures and I know when they are coming I get that ora and headache. I went to a neurologist and he did all the test and told me I had Dystonia!!! Look it up and it my be the answer to your prayers. I have the Grand Mal like seizures, sometimes I have jerks and twitches. My family knows how to help me and protect me. And the ambulance doesn't get called every time. hugalot

tommyb98201
New Member


Date Joined Sep 2008
Total Posts : 4
   Posted 9/20/2008 1:34 PM (GMT -7)   
Dont give up, get more opinions, she may just need the right med. Im not a doctor but it took me 4 different meds until I found one that worked for me.
God Bless

nashira
New Member


Date Joined Oct 2008
Total Posts : 1
   Posted 10/2/2008 9:38 PM (GMT -7)   
Hi I have had SZ for about 4 or 5 yrs i am a paramedic and its has really messed up my carrier. I was watched and told i didnt have epilesy. I had mental issues. So two years later I had a SZ so bad that i was treated and intubated. I dont remember 5 days. Thankfully i fianlly got the attention i needed i was dianosed with Rasmussins Epilepsy very rare in adults. So it was do to brain swelling i had at age 17. I have been on Keppra for years and still have break through SZ. The Best advice i can give is if you know something wrong go with your gut instent and keep having her tested and treated. Maybe Keppra not the medication for her.
 
 
Best of luck ill keep her in my prayers
Epilepsy six years : Deppression: Agoraphobia
Medications....Keppra 2000mg: Pristiq 50mg :Geodon 20 mg :Ativan as needed...
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Remember today is just a day and tomarrow is another... Stay Strong.


MISTYGIRL
Regular Member


Date Joined Sep 2008
Total Posts : 27
   Posted 10/10/2008 12:34 PM (GMT -7)   

 Hi,

 I have Epilepsy and I have had pseudoseizures (fake seizure or stress seizures ) a few times myself and what you are describing kind of sounds like a grand mal seizure but I would see a specialist (neurologist) it is not necessarily always a mental issue.Their are other medications becides Keppra out there, gabitril,topomax,felbamate and a host of others.

 Good Luck

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