seizure question

MrsJones2005

I hope you ladies don't mind me posting over here, but I figured there would be some people with experience that could help me.

One of my girls has had a few seizure episdoes over the last 2 years, that has led to mulitple tests.  The MRI showed no damage, but the sleep deprived EEG showed seizure activity so they did a 48 hour EEG last week.  Today the nurse called and told me that the test showed "tendency for seizures" although she didn't actually have one during the 48 hours.  But, she couldn't tell me what that meant and can't make me a follow up appointment with the doctor until the 17th. 

Can anyone shed some light on that for me?  Is it something I need to be concerned about?  Or is it really unclear until I meet with the doctor?

lazysusan

DS has a hx of them, but MRI, CAT scan, blood work, and EEG's came back negative.  I'd be only guessing at what tendency to have them meant on an EEG.  Sorry I'm not more help...

REOM

I bet they will want to medicate her. My DD has had one seizure, and what they think are 'staring' seizures, and the drs want to medicate her but I am apprehensive.

Lazysusan, does your son take medication?  My daughter's test also came back negative, which is why I am hesitant to medicate her. Thanks!

MrsJones2005

REOM:

I bet they will want to medicate her. My DD has had one seizure, and what they think are 'staring' seizures, and the drs want to medicate her but I am apprehensive.

Lazysusan, does your son take medication?  My daughter's test also came back negative, which is why I am hesitant to medicate her. Thanks!

Really they want to medicate her for one seizure?  When Kathryn had her first episode, they did all the tests in the ER, then admitted her to the PICU for a day and then made her stay another night in a regular room.  But all the tests were negative, so they said it could be a fluke and they wouldn't talk medication until it was a continuous problem.  She has since had a few more episodes, and thats why we got sent back for another MRI and EEG.  The MRI was normal, so the neurologist said that it wasn't causing any permanent damage, but since the first EEG showed some things thats why they wanted to do the 48 hour one.  Have they done one of those on your little one to see how often its happening?  I would be apprehensive if they didn't have a GOOD reason why she needed to be on medicine.  Ok I see now you said "staring seizures" (we've had some of those) how often is this happening?   

REOM

MrsJones2005:

REOM:

I bet they will want to medicate her. My DD has had one seizure, and what they think are 'staring' seizures, and the drs want to medicate her but I am apprehensive.

Lazysusan, does your son take medication?  My daughter's test also came back negative, which is why I am hesitant to medicate her. Thanks!

Really they want to medicate her for one seizure?  When Kathryn had her first episode, they did all the tests in the ER, then admitted her to the PICU for a day and then made her stay another night in a regular room.  But all the tests were negative, so they said it could be a fluke and they wouldn't talk medication until it was a continuous problem.  She has since had a few more episodes, and thats why we got sent back for another MRI and EEG.  The MRI was normal, so the neurologist said that it wasn't causing any permanent damage, but since the first EEG showed some things thats why they wanted to do the 48 hour one.  Have they done one of those on your little one to see how often its happening?  I would be apprehensive if they didn't have a GOOD reason why she needed to be on medicine.  Ok I see now you said "staring seizures" (we've had some of those) how often is this happening?   

Yes, one seizure.  After that, she had an MRI, EEGs and had already had a normal CAT scan a few months earlier for an unrelated issue.  

I knew she did this weird staring thing, but I didn't realize they were considered seizures.  It is an ongoing thing, and the pedi and the neuro want to try Keppra to see if that stops it, but I want to wait to see if they stop on their own. 

lazysusan

He's on the generic Keppra.  We were really hesitant at first with all his negative tests.  After the first we waited and they didn't want to do anything either.  After the second same story.  Third hits and he had what they call a cluster.  He had about 4 that day lasting a few minutes each.  Ativan didn't stop them.  He has localized spreading to generic that are REALLY obvious.  This is when they gave us PRN Diastat and the daily Keppra.  They didn't think the seizures were causing any damage, but worded it with us that the medicine could actually train his brain not to have seizures.  With continued seizures the pathways were developing for them to continue, and his threshold for having them would get lower if that makes sense.  He had another really bad cluster day, but then they started a therapeutic dose.  He's been seizure free over a year.  We haven't noticed any true side effects, so for us it only makes sense to stick with the medicine.  His seizure episodes were all spread apart by 5-6 months.

MrsJones2005

REOM:

Yes, one seizure.  After that, she had an MRI, EEGs and had already had a normal CAT scan a few months earlier for an unrelated issue.  

I knew she did this weird staring thing, but I didn't realize they were considered seizures.  It is an ongoing thing, and the pedi and the neuro want to try Keppra to see if that stops it, but I want to wait to see if they stop on their own. 

Just curious ... have they done an ambulatory EEG (48 hour EEG)?  My doctor's theory at the last appt was that since the MRI was showing no damage then not to put her on medicine until we did a 48 hour EEG to determine how often it was happening and then we would discuss medicine.  They did give us diastat (did i spell that right) for emergency situations though.

MrsJones2005

lazysusan:

He's on the generic Keppra.  We were really hesitant at first with all his negative tests.  After the first we waited and they didn't want to do anything either.  After the second same story.  Third hits and he had what they call a cluster.  He had about 4 that day lasting a few minutes each.  Ativan didn't stop them.  He has localized spreading to generic that are REALLY obvious.  This is when they gave us PRN Diastat and the daily Keppra.  They didn't think the seizures were causing any damage, but worded it with us that the medicine could actually train his brain not to have seizures.  With continued seizures the pathways were developing for them to continue, and his threshold for having them would get lower if that makes sense.  He had another really bad cluster day, but then they started a therapeutic dose.  He's been seizure free over a year.  We haven't noticed any true side effects, so for us it only makes sense to stick with the medicine.  His seizure episodes were all spread apart by 5-6 months.

Thank you for explaining this.  I had no idea that continued seizures would make the threshold for more seizures lower.  That makes the idea of putting them on medicine easier to deal with.  I'm glad your DS has responded so well to the medicine!  Thanks for sharing! 

Paigeo

I tried replying earlier but my DD got in the way.  Our experience is similiar to lazysusan's.  My DD 1st started having seizures at 2 wks old.  Hers tended to come in clusters and the more she had the worst they got.  She has had several EEG's, MRI, CT Scan, etc and everything has always come back as normal.  She has been on Keppra since 5 months old and has been seizure free for a little over a year now.  Sometimes I still wonder if she is having small seizures but it can be hard to tell.    I am not really sure what "tendency for seizures" means.  I would guess they saw some sort of abnormal pattern.  Or maybe the pattern was normal and since she didn't have a seizure during the test but has a history of seizures that is their default result that goes with the test.  I would definitely not worry about it until you talk with your neuro.  I thought I read somewhere that if you take 100 people off the street a certain % is going to have an abnormal EEG even though they have never had seizures or other problems.  For my DD we will stay on the Keppra until she has gone 2 full years seizure free and then if a repeat EEG and MRI are normal then we will try to wean her off the medicine.

lazysusan

we haven't had any 48 hour EEG's.  I'm not sure if that would show a lot as his history is going months without.  I'd be curious though.  He'd probably be able to handle it now at almost 4, but with the 3 done between 15 months and 2 1/2 he was very agitated with them sticking the electrodes to his head.  I'm not sure how we would have kept them on 2 days.  We wanted one done when he was having his last cluster, but the resident didn't think it was necessary.  The next day the doc wanted one and we refused as he had 3 normal ones and was out of the episode, and heavily sedated on meds. 

MrsJones2005

lazysusan:

we haven't had any 48 hour EEG's.  I'm not sure if that would show a lot as his history is going months without.  I'd be curious though.  He'd probably be able to handle it now at almost 4, but with the 3 done between 15 months and 2 1/2 he was very agitated with them sticking the electrodes to his head.  I'm not sure how we would have kept them on 2 days.  We wanted one done when he was having his last cluster, but the resident didn't think it was necessary.  The next day the doc wanted one and we refused as he had 3 normal ones and was out of the episode, and heavily sedated on meds. 

Keeping it on for 48 hours was easier then I thought.  They wrapped it up real good with gauze, and gave her a pink bandana, which she thought was a princess hat.  Then they put a small machine in a back pack and she had to wear that.  THAT was the annoying part, taking the backpack everywhere, but she handled it like a champ!  I can't believe they didn't do an EEG while he was having a cluster...that seems odd.  I'm sorry!

REOM

MrsJones2005:

REOM:

Yes, one seizure.  After that, she had an MRI, EEGs and had already had a normal CAT scan a few months earlier for an unrelated issue.  

I knew she did this weird staring thing, but I didn't realize they were considered seizures.  It is an ongoing thing, and the pedi and the neuro want to try Keppra to see if that stops it, but I want to wait to see if they stop on their own. 

Just curious ... have they done an ambulatory EEG (48 hour EEG)?  My doctor's theory at the last appt was that since the MRI was showing no damage then not to put her on medicine until we did a 48 hour EEG to determine how often it was happening and then we would discuss medicine.  They did give us diastat (did i spell that right) for emergency situations though.

Yes, we did the ambulatory EEG and our experience was similar to yours with the gauze hat and the backpack. The results were normal, as were the EEG results they took in th hospital after her seizure.

Like the PP, the doctor explained that each seizure lowers the threshold for another seizure. Other things that lower the threshold are being sick, tired, drinking alcohol, vaccines.  Like I said previously, we didn't realize that this 'staring' thing she does is actually little seizures. We haven't had an EEG done during one of these episodes.

The pedi wants her to start the medicine, but we are going to wait to talk to the neuro at our appt next month. I'm glad to hear that other posters have had success with Keppra without side effects. It's scary to give your child mind altering medication   

Good luck to you and everyone on this thread!

OctBaltBride

This is only a guess but maybe the saw some activity but nothing major. My DS had a partial/complex seizure when he was 7mo. His EEG showed seizure activity. We were sent home on Tegratol and Diastat (incase the seizures last more than 5 min.). Aaron has done great on the medication and only tends to have seizure once every 9 month.