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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 janb on Tue, 2005-03-15 - 15:11

hello,

i know your feeling i had a doctor tell me my daughter was faking her cp seizures she has had them since she was

14 yrs old she is now 33 yrs old and  they cannot control hers with meds she also has the VNS and i cant see any diff with it but i guess it helps all they do is keep turning it up and up on her meds

she cant go to many places that she dont fall and the ems is called most of the time if she is not bleeding i will tell them not to take her she just had a seizure she will be ok in few min

i also have the medic alert braclet on her and they do call for info

good luck to you and yours

hello,

i know your feeling i had a doctor tell me my daughter was faking her cp seizures she has had them since she was

14 yrs old she is now 33 yrs old and  they cannot control hers with meds she also has the VNS and i cant see any diff with it but i guess it helps all they do is keep turning it up and up on her meds

she cant go to many places that she dont fall and the ems is called most of the time if she is not bleeding i will tell them not to take her she just had a seizure she will be ok in few min

i also have the medic alert braclet on her and they do call for info

good luck to you and yours

RE: Complex Partial Seizures

Submitted by Jennifer65 on Tue, 2005-03-15 - 15:31

Oh yes- I know exactly what you mean about the medical profession. They sure know how to make a difficult situation much worse.

The paed who looked after my daughter when she was admitted to hospital with a rash last weekend was pretty rude to me. He made it clear that as he has never seen a valproate rash my daughter's rash couldn't have been caused by the Epilim. He was really sarcastic about the reading I have done on the subject of epilepsy. Some doctors can't cope with patients who make the effort to be well informed. He then took her off all meds and implied that she never needed them and left me in no doubt he saw me as a neurotic mother.  I felt so humiliated. I feel your pain Ferrhi!! Suggesting you need a psychiatrist is just such an offensive thing to say:-(

He did do us a favour by taking her off all meds though because she has been much better off the Epilim and hasn't had non stop seizures like last time we tried to stop it. Maybe she was on it long enough to settle things down in her brain. She is still having simple partial and absence seizures on a daily basis but she wasn't completely seizure free on the Epilim either and it is much preferable to me that she is functioing albeit with some seizures than the zombie she was on the Epilim. So unless things worsen she will stay off meds.

 

Oh yes- I know exactly what you mean about the medical profession. They sure know how to make a difficult situation much worse.

The paed who looked after my daughter when she was admitted to hospital with a rash last weekend was pretty rude to me. He made it clear that as he has never seen a valproate rash my daughter's rash couldn't have been caused by the Epilim. He was really sarcastic about the reading I have done on the subject of epilepsy. Some doctors can't cope with patients who make the effort to be well informed. He then took her off all meds and implied that she never needed them and left me in no doubt he saw me as a neurotic mother.  I felt so humiliated. I feel your pain Ferrhi!! Suggesting you need a psychiatrist is just such an offensive thing to say:-(

He did do us a favour by taking her off all meds though because she has been much better off the Epilim and hasn't had non stop seizures like last time we tried to stop it. Maybe she was on it long enough to settle things down in her brain. She is still having simple partial and absence seizures on a daily basis but she wasn't completely seizure free on the Epilim either and it is much preferable to me that she is functioing albeit with some seizures than the zombie she was on the Epilim. So unless things worsen she will stay off meds.

 

RE: Complex Partial Seizures

Submitted by amycleveland on Tue, 2005-03-15 - 16:29
Hello. Complex partial seizures can be different every time. I have a 3 yr. old who has never had the same seizure twice. It all depends on the focal point and the area of the brain it has reached. Have the ER call her neurologist every time she comes in. He / She would be able to tell the ER whether it sounds like she is faking or not. Plus the post-tictal time for each seizure can also vary from nothing to hours. I have found that complex partial seizures confuse most ER's because they are so different from what they consider a seizure, like the tonic clonic type. Hope this helps,Amyamyl.cleveland@sbcglobal.net

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