Clean 48 hour EEG but still having seizures

Krismutt

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Hello,

Two weeks ago my 13-year-old daughter had a AEEG for 48 hours. She has been experiencing strange type of auras or seizures. She was diagnosed 3 years ago with Gelastic and absence seizures and had been seizure free since being medicated on Trileptal. Because of the low dose she was on, doctor felt we could slowly take meds down to see if she was even having them.

Six weeks ago she started having strange feelings of lightheadedness, eye pain then would get nausea when she was getting down to the last bit of medication. It would last 15-20 minutes in the beginning but as the weeks went by it got up to 90 minutes. We had to slowly add meds back up and things started to slowly go away but we still did AEEG because they were not stopping at the dose she was on originally of 600 mg a day of Trileptal. So now we are up to 900 mg a day and still having these episodes though now about 20 minutes, sometimes even 10 minutes.

Yesterday I finally seen her have an absence seizure that was only like 7-10 seconds then she had the feelings as described above for about 20 minutes.

Her neurologist called me today and said her AEEG was completely clean even though she had one of these episodes during the AEEG. He still believes she is having seizures so we are now going to up her meds putting her at 1200 mg a day.

I don't get why this is all happening and not being controlled on the original dose. We are very frustrated. She is scared and tired of it too. The doctor said if things worsen or don't stop soon we are going to have to admit her to the hospital for an EEG there and possibly further testing.

She does have a brain abnormality of a brain lesion in her occipital lobe that she was born with but too small to operate on and too dangerous to take out as it could cause blindness.

I don't know what to think anymore. I am tired of hearing people tell me you should feel lucky it could be worse. Well yeah I know that but it doesn't make it any better when you know your kid is scared and tired of feeling this way. People just don't get it. I can't talk to most of my family because they dismiss it as if she has a small cut and a bandaid will help to make it go away or if I post a picture of her having her EEG telling me how can you do that like it offends them when it is only posted for family to see. :mad:
Sorry I am venting. Thank you for hopefully understanding.
:)
 

Nakamova

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How frustrating and nervewracking for you and your daughter. :( I hope the higher dose of Trileptal is able to stop the seizures. Has the neurologist suggested adding or switching to a different med if the Trileptal no longer does the trick? (Trileptal isn't ordinarily considered effective for absence seizures, so a different med might be worth pursuing.)

Another possibility might be the Modifed Atkins Diet -- it has been successful in reducing seizures, particularly absence seizures. Hang in there.
 

Krismutt

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He did mention that if things don't get better he may add another medication and also do the hospital EEG. He does not feel a need for an MRI as she just had one last summer and he said unless she really has more serious problems he feels no need for one now and I am okay with that. She also has gelastic seizures but that hasn't presented this time around. Her symptoms from the seizure have lessened quite a bit since we went up to 900 mg 8 days ago but starting today we are going up to 1200 mg so hopefully that will do that the trick.
 
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Regarding the clean EEG: my son was in hospital for a planned 48-72 hour video-monitored EEG. He lasted 36 hours before ripping off all the leads. His EEG was clean as well. Sixteen days after he was discharged, he had another seizure.

So I can't offer any advice, but I can definitely sympathize. This process has been very frustrating, as I'm sure you'd agree.

I hope you're able to find something that works in controlling her seizures!
 

Krismutt

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Yep very frustrating especially since we were for sure thinking what the doctor believes are seizures had happened during this 48 hours. She never had these issues until we took the medicine down and the more we took it down the worse it got.

Now that we are going back up it is getting better. Today she had another one at school and was only 5 minutes as opposed to 20 minutes the other day. BUT the pattern is different now. She used to have these episodes during certain hours and the last two have been out of that pattern this week. So strange. Plus she is dealing with allergies, and being sleepy from the medication as she gets adjusted to it again.

I hope Saturday she can enjoy her birthday and not worry about having a seizure when we go swimming. I will be mamma bear watching the pool.
 

Krismutt

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How did everything go?
Thank you for asking!!

Well just as we left the house she had one of her episodes and when she has them in the car it gives her motion sickness. So we started the day off not so well. But the day got better and she enjoyed her time with her friends, went swimming and it was fun.

She is still having these "episodes" so now after being taken up to 1200 mg a day and still having them every other day we are now being taken up to 1800 mg a day for a week and if no better looks like a hospital visit could be in our future. I am getting quite concerned that it is not being controlled and starting to wonder what else is going on.

Then to top it all off Sunday night she came down with Strep throat. I just want to scream. This kid has had a bad year. 6 months of physical therapy for a severe hip flexor tear, all the seizure problems, dealing with falling back in school because of everything. She loves to dance and was in a performance troupe and she had to exit the group because of her injury and still is not dancing from when it happened in December because she is still rehabing.

I am at my wits end.
 

donnajane

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GBH. Could the Strep throat be affecting her seziures and meaning the meds seem to not be working as well? My little man often has more seziures or NQR periods leading up to being sick and then when sick. Just an idea may not be related at all.
Glad the day turned out better and she had fun with her friends.
 

masterjen

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At 13 your daughter is entering puberty so hormone levels are changing. And seizures can increase around puberty (and of course can increase around that infamous time of the month for older teens and women). Any comments from your Drs. that the increase in seizures in your daughter might be due to this?
 

Janus

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This is really interesting to me. I have had seizures during EEGs and been told after that i do not have a seizure disorder. Vis vis also.
 

jayde-101

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I agree with mastergen ...you may want to get her hormone levels checked other may be the she is hitting puberty and its causing the seizures ... Im 23 and i am nearly always in hospital the week of my period each month due to a bad seizure ...they have got me on contraceptives so i can kinda pin point when my period ....

Its worth looking into hope all goes okay and keep us inform
 
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