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.
Sorry I am venting. Thank you for hopefully understanding.
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.
Sorry I am venting. Thank you for hopefully understanding.
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.)