Anyones DC on Keppra for seizures? Other ?'s

jamaicagal

If so, what's their dosage and how much do they weigh?

 DS had a seizure about a month ago that lasted over an hour. No cause has been found and EEG/MRI came back normal. He had a low grade fever when we got to the hospital and it did raise to 104.5, so they are ruling it a febrile seizure.

 Ped. neurologist wants to keep him on Keppra for 1-2 years since he would be more likely to have another long seizure if one did occur and she wants to double his dosage from 1 mg/2 times day to 2 mg/ 2 times day because he's gained 1 lb and she said to anticipate future weight gain.

I'm reading a book from Johns Hopkins that says he only has a 70% chance of this happening so I'm still not convinced we should be pumping him full of meds. She said they wouldn't do this in the past because of the negative side effects of seizure meds but since they haven't found any problems w/ Keppra, she thinks it would be better to be on the safe side.

Do you think a 2nd opinion is in order or should I stop playing doctor?

Bashert628

I was just browsing boards and I normally don't post here, but I wanted to let you know that I had febrial seizures from the time I was 6 months old until I was 10 years old. My doctor had me on a medication called Meberal for those 10 years, and today I am a perfectly healthy 26 year old. There have been no negative side effects from the seizures or the medications (and I had a lot of seizures) so far, but I don't think the medication could hurt. I would definetly get a second opinion however.. If you have any questions, I usually post on the Knot on the North New Jersey board.

Paigeo

My DD is on Keppra to control seizures.  She had 2 seizures when she was only 2 wks old.  I was the only witness and at the time I was not 100% sure they were seizures.  They were very very quick.  She was admitted to our local Children's hosptial and had an EEG that came back fine.  So at that point her neurologist didn't start medication.  At 5 months she had a cluster of seizures.  I think 8 in total before they gave her medicine in the ER to stop them.  None of them were very long and they were none of her seizures were ever associated with a fever.  She had another EEG, CT Scan, MRI, countless blood tests and everything has always come back normal.  She was diagnosed with epilepsy and originally started on Trileptal.  She developed an allergic reaction so they swtiched her to Keppra.  I have read up on the Keppra and though I hate medicating my DD I definitely feel it is the right decision to have her on it and feel more comfortable with it then the Trileptal that they tried 1st.  At this point they want her to go 2 years seizure free on it before they will talk about weaning her.  I am suprised that they wanted to medicate your DS after only 1 seizure incident that was fever related but I figure it has to do with the severity of it.  I know what you mean about wanting to play doctor.  I certainly want to be educated about my DD's condition by google certainly isn't always a good thing.  I feel lucky that we have a good Children's Hospital near us with a very good ped neurology clinic that I feel very comfortable with.  If I were you I would get a 2nd opinion.  It can't hurt and at least might help you clarify your feelings.  Please let me know if you have any other questions.

Paigeo

Sorry I got so caught up in telling my own story that I forgot your original question.  She takes 1 ml twice a day and currently weighs 17 lbs.  We have an appointment with our neurologist every 3 months to check for any developmental delays and adjust her medication for any weight gain.

AB&TB

My DS is on Keppra for focal seizures.  These show up on the EEG but are not physically manifested.  He is on 1ml 2x/day and weighs 20 lbs. He is also on Sabril (250 mg 2x/day for Infantile Spasms and the focal seizures), so he is on a mini drug cocktail.  The doctor said that the only side effect of Keppra is some drowsiness the first week, and then some hyper-activity in older children (not infants). 

I would question your doctor, and if you are uncomfortable with his answers, then get your second opinion.  But I would also trust that they know something about what they are doing.  Do what you need to do to be your child's advocate.  Best of luck to you!