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Complex Partial Seizures

Tue, 03/22/2005 - 11:40
How do you parents with kids with partial seizures cope with the medical system? My daughter who suffers from complex partial seizures had a seizure this morning at the school bus stop. The ambulance took her to the ER. The ER told me they believe she is faking! She has only had about six seizures since August, 2004 but they all take the same form. Does anyone else get as frustrated as I feel right now? My daughter is 15.

Comments

RE: Complex Partial Seizures

Submitted by mexican_fire on Wed, 2005-03-09 - 14:46

It is very possible she might be.  But if you are who I think you are, then she isn't, and I would jsut ignore the ER doc and listen to your own neuro.

People can have NES and the two most common forms of  seizures that mimic real epilepsy in NES are TCs and CPS.   That is why they said that.

THey don't know her medical hisotry nor her neurlogical history.

Ignore it, and stick with what you know.

I don't go to the ER with seizures.  I belong to MedicAlert adn the walk my mom through things, and have her describing stuff as it happens, and if it goes beyond a certain point, then MedicAlert calls the EMS.

If her seizure are following the same EXACT pattern each and every time, then I would say she is having true seizures.  People who have NES have variable patterns, and also some clinical symptomology that doesn't EVER occur with a real seizure, and they can catch that by watching the seizure very closely.  That is one of the reasons they put people in the EMU.

I can call my epilepsy clinic and get some info for you, I can look in my own books, because I have one here right now that talks about the differences that occur with each kind of seizure NES, or E.

I can talk to my boyfriend, who also has epilepsy, he may know something about this, and I can look at all the junkie things I have here, I have picked up along the way.  I can call the EMU I was in and ask them.

you can e-mail me at jolie_blon@yahoo.com

Nancy AKA sheeba with the EFA.

Also with the fact that she has only had 6 in one year, should be a clear indicator that it isn't fake.  Most people with NES, tend to have them frequently and most are not responsivie to meds, because they don't need them.

Good luck

It is very possible she might be.  But if you are who I think you are, then she isn't, and I would jsut ignore the ER doc and listen to your own neuro.

People can have NES and the two most common forms of  seizures that mimic real epilepsy in NES are TCs and CPS.   That is why they said that.

THey don't know her medical hisotry nor her neurlogical history.

Ignore it, and stick with what you know.

I don't go to the ER with seizures.  I belong to MedicAlert adn the walk my mom through things, and have her describing stuff as it happens, and if it goes beyond a certain point, then MedicAlert calls the EMS.

If her seizure are following the same EXACT pattern each and every time, then I would say she is having true seizures.  People who have NES have variable patterns, and also some clinical symptomology that doesn't EVER occur with a real seizure, and they can catch that by watching the seizure very closely.  That is one of the reasons they put people in the EMU.

I can call my epilepsy clinic and get some info for you, I can look in my own books, because I have one here right now that talks about the differences that occur with each kind of seizure NES, or E.

I can talk to my boyfriend, who also has epilepsy, he may know something about this, and I can look at all the junkie things I have here, I have picked up along the way.  I can call the EMU I was in and ask them.

you can e-mail me at jolie_blon@yahoo.com

Nancy AKA sheeba with the EFA.

Also with the fact that she has only had 6 in one year, should be a clear indicator that it isn't fake.  Most people with NES, tend to have them frequently and most are not responsivie to meds, because they don't need them.

Good luck

RE: Complex Partial Seizures

Submitted by Anne on Thu, 2005-03-10 - 07:21

Hi,

Myson has had partial complex since he was 14 years old, and he still does. He wasn't considered having "real" seizures until they had him in the hospital for two weeks in the EMU.

This, only because I convinced them that he would have a seizure if they let me stress him as it is in real life, not on a fifty foot electrical cord, without any meds. Results were they caught two on tape and they were "very minor" compared to some he has had at home. The doctor and nurses were freaked out that I took them so casually as they all said they were "massive" - needless to say my son son has the left temp lobe PC that sends out a charge to follow uo with a grand mal. It has taken since he is eight years old to get some real assistance from the medical world - now they are thinking of a Vegus Nerve Stimulator as the realize meds just won't do it. My son is 23.

Hang in there! Get involved in every aspect of her treatment. There is nothing the ER can do anyway except take blood levels - unless she gets hurt during the PC. I always refuse to have him transported when I am with him. Your daughter will come too enough to put her in the car and take her home. The important things to monitor - on a calendar - are time, what she was doing before, and during, how long it took to recover ... take this calendar with you to the doctors or bring in a list. Make sure the doctor copies the information into her records so they can backtrack to see patterns. There are clear signs that they are real. I know because my son has had "fake" ones too. Clearly they are different. A real seizure, with repetitious symtoms would be almost impossible to fake :)

Wishing your gal a speedy solution,   

Anne 

   

   

 

Hi,

Myson has had partial complex since he was 14 years old, and he still does. He wasn't considered having "real" seizures until they had him in the hospital for two weeks in the EMU.

This, only because I convinced them that he would have a seizure if they let me stress him as it is in real life, not on a fifty foot electrical cord, without any meds. Results were they caught two on tape and they were "very minor" compared to some he has had at home. The doctor and nurses were freaked out that I took them so casually as they all said they were "massive" - needless to say my son son has the left temp lobe PC that sends out a charge to follow uo with a grand mal. It has taken since he is eight years old to get some real assistance from the medical world - now they are thinking of a Vegus Nerve Stimulator as the realize meds just won't do it. My son is 23.

Hang in there! Get involved in every aspect of her treatment. There is nothing the ER can do anyway except take blood levels - unless she gets hurt during the PC. I always refuse to have him transported when I am with him. Your daughter will come too enough to put her in the car and take her home. The important things to monitor - on a calendar - are time, what she was doing before, and during, how long it took to recover ... take this calendar with you to the doctors or bring in a list. Make sure the doctor copies the information into her records so they can backtrack to see patterns. There are clear signs that they are real. I know because my son has had "fake" ones too. Clearly they are different. A real seizure, with repetitious symtoms would be almost impossible to fake :)

Wishing your gal a speedy solution,   

Anne 

   

   

 

RE: Complex Partial Seizures

Submitted by Ryahbelle on Fri, 2005-03-11 - 09:47
My daughter also has CP seizures!! Every trip we take to the ER makes me feel so frustrated!!!! I feel like no one believes me and that they think I am wasting their time!!! I always leave feeling like everyone thinks I am one of those Mom's who fake an illness to get attention! As a Mom, I KNOW there is something wrong with my daughter. All her life she has been in and out of the hospital with things from kidney infection, dehydration, possible heart problems and now seizures!!! Trust me, we have spent A LOT of time in the hospital. And every time we do we get left in a little room for hours until finally someone comes in gives her a quick check, then sends us home!!! Does it matter if you are SCARED to take your child home? Apparently not! My daughter is 4 years old. I FEEL your frustration!!!!!

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