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Duaghter having multiple seizures for 30 minutes
Sat, 07/14/2012 - 09:48
Hi all. My 16 yo daughter has a host of medical issues but was recently
hospitalized with intractable pain due to her CRPS (pain disease) and left side weakness. A day in to
the hospital stay she started having seizures during her sleep. About a
month ago while in another state for unrelated medical treatment she was diagnosed via EEG with Complex
Partial Seizure Disorder. We had never witnessed a seizure but she has
had several falls over the years so we just assumed this accounted for
all the falls. I also assumed when this recent episode started, here
come the seizures she was diagnosed with last month.
So, while in the hospital this week she had about 70 seizures in a day
and a half. 45 of them were caught on video monitored EEG. The neuro
came back saying non epileptic seizures. I do not believe these are
pseudo seizures. I think there is a physical cause OR the EEG did not
pick them up because they originated deep in her brain? is that
possible? I have never had a reason to research seizures until now!
This is what hers are like: usually preceded by a strong chemical
smell, sometimes a funny feeling in her stomach. Most actually started
shen she was sleeping though. Her left hand, always raised up slowly to
her face or chest, hand claws up, she mostly hits at her face
repetitively with a clawed hand, sometimes her chest, her body is very
rigid especially her left arm and hand. Her right arm remains
completely relaxed and pliable. Sometimes she arches her back or neck.
She is grunting, sometimes saliva foams out her mouth. it seems like
breathing is very labored or forced. Eyes roll back in her head and move
side to side, sometimes lids flutter slightly. most of the episodes
lasted 30 seconds up to 2 minutes. Some times the episodes would go on
for about 15 minutes in total....30 second seizure,,,,,20 second break
and then start up again.....one minute break, start up again....on and
on. When the episode is over she slowly relaxes, her eyes are glassy,
she is confused and can't speak for a moment. when asked her name it
takes a while to get an answer. She finally comes to and can answer but
speach is difficult for about a minute. She is then VERY tired and
lays there for a while.
The video EEG did show "slowing in posterior temporal lobe" but this did not
coincide with any of her episodes so they are not calling them seizures.
The doctor that did the original EEG is in another state, I called for her advise and she said ask for a PET scan and or get her to epilepsy specialty center. well, turns out we were already at a
level 4 epilepsy center. I requested a PET scan and they acted like I
was crazy, said it wasn't medically necessary and sent us home! I told them pseudoseizure shoudl be a dagnosis of exclusion and I did not feel they ruled out every physiological reason for a seizure. Needless to say they discharged her with a diagnosis of pseudoseizure.
Well we are home and last night just as my daughter was falling asleep a 30 minute episode began. She would have seconds of "waking" looking at as but could never speak during these breaks, only nod and mumble that yes she was awak. Finally after 30 minutes she came to and could acknowledge us but it took about 2 minutes before she could speak again.
I wanted to call EMS or take her to ER but I know they have labeled them as psych. I am worried about the lack of oxygen getting to her brain during these seizures. I don't know where to take her. I feel like this is an emergency, we can't wait the months it takes to get in to neuro's.
Thank you for any opinions or advice,
Donna
Comments
Re: Duaghter having multiple seizures for 30 minutes
Submitted by ddd15 on Sun, 2012-07-15 - 09:36
Thank you for your reply. Yesterday she only had one "episode". They seem to be brought on by sleep. It is right when she starts to drift off to sleep that they happen. I don't know if that is common or not. The reason I am concerned about blood to the brain is, her blood pressure was taken immediately after and it was around 90/45. Also, she is so disoriented when she awakes. She can't form words or answer simple questions. It takes her a while to answer what her name is.
I googled grand mal seizure out of curiosity and she was every characteristic except bladder/bowel control. I looked at videos of them and this is what she looks like. I am scared to watch these and do nothing while waiting to get another opinion.
While in the hospital one time she had several seizures in a row and they gave her ativan. I have some at home from a prior procedure she had done. I gave it to her and it helped. I am thinking of asking one of her doctors to prescribe this until we can find answers.
My daughters other diagnoses are rare and many doctors don't know or understand their complexities. I am always turning to the internet for anwers. That is so sad, but I'm so grateful we have this option! Thank you!
Thank you for your reply. Yesterday she only had one "episode". They seem to be brought on by sleep. It is right when she starts to drift off to sleep that they happen. I don't know if that is common or not. The reason I am concerned about blood to the brain is, her blood pressure was taken immediately after and it was around 90/45. Also, she is so disoriented when she awakes. She can't form words or answer simple questions. It takes her a while to answer what her name is.
I googled grand mal seizure out of curiosity and she was every characteristic except bladder/bowel control. I looked at videos of them and this is what she looks like. I am scared to watch these and do nothing while waiting to get another opinion.
While in the hospital one time she had several seizures in a row and they gave her ativan. I have some at home from a prior procedure she had done. I gave it to her and it helped. I am thinking of asking one of her doctors to prescribe this until we can find answers.
My daughters other diagnoses are rare and many doctors don't know or understand their complexities. I am always turning to the internet for anwers. That is so sad, but I'm so grateful we have this option! Thank you!
Re: Duaghter having multiple seizures for 30 minutes
Submitted by Masterjen on Sat, 2012-07-14 - 15:57
I'm in no position to say whether they are PNES or not, but you said she does have an abnormal EEG. It's not normal to have an abnormal EEG!! Don't be afraid to seek a second opinion. Maybe it will take months to get in to see another neuro. but to me it sounds like a 2nd opinion is warranted. If you're concerned about the breathing issues, surely the center you were at can tell you if it is harming her. Whether PNES or not, lack of oxygen to the brain is a risk. Always note if her lips or fingertips are blue - that is a clear sign she needs immediate medical assistance.