Special Needs

WWYD? Re: stopping DC's seizure med? Long!

Let me preface this by saying that my DS has had ONE febrile seizure, with no reoccurances or any other types of seizures.  That being said...

His febrile seizure occured in Oct. when he was 18 mos. It was deemed a medical emergency because it did last about one hour. We were in the hospital for a couple of days; he had an EEG which was normal and went home on Keppra (anti-seizure med). A month later he had an MRI and EEG and follow up with a ped. neurologist. All tests came back normal. She had recommended a book to me "Seizures and Epilepsy in Childhood" (put out by drs. at Johns Hopkins), which said children who had one febrile seizure (or even more than one, if deemed febrile) even if it lasted a long time like my sons really do not need medication, however an emergency medication such as Diastat (rectal gel) should be on hand if they were to have another long seizure.

I was surprised in Nov. when the ped. neur. said she'd like to keep him on the Keppra for a year "just to be on the safe side". I asked her why the book seemed to frown on that and she said it was because seizure meds. typically have always had negative consequences/side effects and in the cases of febrile seizure, it was better to have kids on nothing at all than risk the side effects. But she said they've found no negative side effects with Keppra (although it's only been on the market for about 8 years). I didn't feel great with the response, but have kept DS on it.

Now we just had a checkup again. DS is totally developmentally on and he also got through a 3 day stint of the flu where he wasn't keeping the meds down. She said those were great things and she'd like to up his dose (to compensate for his weight gain) and in 6 months do an EEG and take him off if he still is doing fine. I have asked her to do the EEG now and wean him now if she thought it was ok. All I got was,"Well I can't force you to give him medication if you don't want to." I explained I would do whatever she thought was best since I'm not a doctor but do worry about any potential long term effects of keeping him on this medication unnecessarily.

Do you think I'm being unreasonable? WWYD? I know it would only be 6 mos. but then he'll only be 2 1/2 and would still be prone to febrile seizures until age 5. We would still keep the Diastat on hand in case of emergency.

Re: WWYD? Re: stopping DC's seizure med? Long!

  • I would do what the doctor said, but that is a personal thing.  Make sure to express your concerns, and find out why they are or are not valid.  If you are still uncomfortable get a 2nd opinion.
    imageimageimageimageimage 9/07 m/c baby boy @ 18wks, 4/09 m/c @ 4.5wks
  • With dealing with doctors, I have learned to research things out the end.  If you have documentation that says things contrary to what your doctor has said and you feel he could do fine with out the medication, then get a second opinion.  Each and every doctor I have come into contact with has his or her own opinons about certain things as do we as parents.  Personally, I am for medication if only to be proven necessary. Your DC has only had one febrile seizure but has had clean EEGs and the such since.  I would be asking the same questions and wondering the same things as you are.  I would definately seek a second opinion.  GL with everything.

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  • I really appreciate these opinions! I am just continually going back and forth on this and have asked the same questions over and over again of the doctor and don't feel like I've been given good reasons for keeping him on 6 more months. I've also asked her if he's prone to febrile seizures until age 5, why wouldn't we keep him on it until then (I don't want to do this, but did want an answer) and she really didn't give me a solid answer.
  • I don't have a background in febrile seizures but my son is prone to seizures too due to a brain abnormality and has them when he gets a fever (like febrile).  I actually just took him this week for a check up with his pedi neuro.  Here is my 2 cents, did she ever mention keeping him on medication till he was seizure free for two yrs.?  I know with A. they want him to be seizure free for two years before they take him off his medication.  A. was taking 2 mls of tegratol.  We were hoping that he would just outgrow the medication and that his brain would compensate for the area that did not develop properly.  He was almost seizure free for 1 yr. until Christmas.  We took him to the ER and there they checked his level which was low and called his neuro who said to up his dosage to 4 mls.  At this point we are back to square one with the tegratol.  When we were at the neuro this week I asked about another level and he said we would do another in 6 month and go from there.  Again, hopefully he will just outgrow it. 

    I have heard about side affects of seizure meds (esp. behavior) and our pedi neuro said that tegratol really had no negative affects.  The worse is that A. will have to switch meds down the road esp. if the medicine stops working as well.

    A. weighs 28 lbs so he raised his diastat med to 7.5.  Whe he had his seizure on Christmas we only had 2.5 on had and I would say within 5 seconds it worked and he came out of his seizure (just for a piece of mind).

    I also was telling him how worried I was for A. to get a fever.  He said that each time he gets a fever he has a 30% chance of having a seizure.  Tylenol or motrin are not going to help.  Basically, if he is going to have a seizure he is going to have a seizure. 

    I said to his Dr. so what happens if lets say he is seizure free for 2 years and we take him off the tegratol and then 2 yrs. later he has a seizure.  He said it could possible happen.  So I said then who's to say that the Tegratol is even working and he just doesn't have a seizure when he gets a fever.  He said to me you can't look at it that way.  You have to look at it like who's to say that he wouldn't be having more seizure if he was not on the medication. 

    Seizures can get a little risky when they go over 45 minutes so I would personally say keep him on the medication for a yr.  I think the potential side affects of the medicine out weigh the  side affects of having a long seizure.  Again, just my opinion but you need to do what you think is best and be comfortable with your decission.

    Are you close to the MD area?  A. goes to Hopkins and I know there they have a team of Drs. who specialized in childhood epilepsy.  If close, it might be worth making an appointment to be seen.

    Good luck!

  • My son has had 3 seizures.  They have found nothing on EEG, MRI, or bloodwork.  His were not related to fever and seem to have no known cause.  I will share my personal experience, but want to also say your doc and you know your son and his situation best.  My son's seizures were not an hour, although he had a hard time with the last one and once coming out would go back into another one.

    We were not given a diagnosis or medication after the first 2.  His seizures were 6 months apart.  After the first they said they would have no idea if the meds were working since he might not have another seizure.  After the second they said some kids are prone to seizures and that he would outgrow them.  They still wanted to hold off on meds because of the negative side effects.  After the 3rd seizure he was given PRN diastat and Keppra.  We were resistent to medication, but did not want him to go through another day like the one of his 3rd seizure.  The doc said that once a kid has a seizure they are more prone to them as the brain almost develops a pathway for it.  The meds over the course of 2 years would help train his brain not to have one.  He's on the lowest dose, and we have not noticed any side effects.  From what I've found and what the doc has said Keppra has minimal side effects, but there can be some.  The main ones he mentioned were increased fatigue, and possible discoordination.  He said a rare side effect could be increased aggression or mood changes (we have not seen this). 

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