Hello, my name is Morgan and I'm new to this fourm and to epilepsy in general. My 8 yr old daughter had her first seizure on 10/29/13 she collapsed at the bus stop and had a tonic-clonic seizure lasting for about 4 minutes. She turned blue and had wet herself durring the seizure as well. Another parent called 911 and she couldnt even remember what happened until she had been at the hospital for a while. They did a CT, blood work, urine analysis and all came back normal. We took her to a neurologist and he ordered a EEG. He explained that it came back showing some abnormal activity but nothing he thought warranted starting medication. He stated the abnormalities just mean that she may be prone to having more seizures in the future but we would have to wait and see what happens to know for sure. He did not want to start medication at that time.
Everything was back to normal, until 1/1/14 then she had another tonic-clonic seizure lasting about 3 minutes. She seemed to come out of it much quicker than the first and it was much shorter. She did not turn blue and it did not seem as severe as the first. I called the neurologist to let him know and he said that it would be up to us if we wanted to start medication. After much research into some of the side effects we decided to not proceed with medication at that time.
Again things went back to normal until 4/8/14 when she had her third seizure. About a week before this seizure i noticed that her behavior had changed, she was very forgetful would "space out" in the middle of alking to her. She was just not all there. She again had a tonic-clonic seizure and this time it lasted 6 minutes and she stopped breathing. She was blue, foaming at the mouth and wet herself. When I got to the school the paramedics were there, I chose to take her home and call the neurologist to see how he wanted to proceed. Upon talking to her further she could not remember what she did that day leading up to the seizure, she had weak legs and had a difficult time walking without tripping or losing her balance. This lasted for about an hour at home then I took her to the ER. They stated she was fine neurologically (just did the typical touch your nose and stand on one foot type of tests). They gave her a Rx for Keppra and discharged her.
We started the Keppra on 4/8/14 and still noticed lingering behaviorial issues, spacy, talking to herself out loud, easily distracted, forgetful. We had a follow up visit with the neurologis and he said he didnt think any further tests were necessary he lowered her dose of Keppra from 250mg 2x's per day to 200mg 2x's per day that was on 4/17. Now today 4/25 she had a total break down at school, it started when one of the teachers found her at recess in the fetal position on the ground crying. They brought her inside and she grbbed onto a door and wouldnt let go. She was screaming at the teachers that she didnt want to move. They called her older sister from class and she would not talk to her and was screaming at her to go away. She then laid down on a bench outside the cafiteria and cried and refused to talk to anyone until i got to the school (this was about an hour and a half, I dont know why they did not call me sooner!!) When I got there it was like no one was home. Normally my daughter is not one to get overly emotional or throw a tantrum. She was crying and could not tell me what was wrong. I tried to reason with her and tell her that we would go home and just relax. This caused her to start protesting and yelling that she didnt want to go home. I tried to guide her out of school and she stood her ground in the hall refusing to move. I tried to pick her up and she kicked and screamed and tried to hit me. it got to the point that the principal helpped me carry her out and try to get her in my van. She continued to cling to door frames and had to be pried off of the van door handles. Finally the principal got into my car and offered to keep her under control in the back while i drove to the ER.
By the time we got there she had calmed down enough to agree to go inside and be seen, she gradually got more and more "normal" while we were there. they did a blood test and urine test which were both fine. I paged her doctor 3 times and did not hear from him until we were being discharged. His nurse called back and said if we were already at the ER there was nothing further he would do at that time and I needed to schedule an appointment on Monday to discuss with him.
Even now she is still not her self. We told her to take a shower and get ready for bed. We found her sitting in the tub with a towel wrapped around her about 15 minutes after her shower was done. When I asked what she was doing she said she just feels sad and tired.
I know Keppra can have behaviorial side effects but this to me seems extreme. I'm concerned that the change in behavior started about a week before her last seizure and has just gotten worse.
Has anyone had an experience like this with Keppra?
Can a seizure disorder cause behavioral changes this extreme?
What tests can be run or should the doctor check for? Could an EEG show if her condition has worsened since she had the last one 6 months ago?
Thank you for reading this HUGE post i greatly appreciate any input or advise you might have!