Help from Moms with Kids with Seizures - What would you do if you were me?

[MusicCityMom]

My DS is 5 years old and has had two seizures in his life.  The first was a year ago (last December) he had a grand mal seizure that occurred while he had a fever which lasted about 5 to 10 minutes.  The initial diagnosis was a febrile seizure but to be cautious they did an EEG which came back abnormal.  The Epileptologist who read his EEG diagnosed him with Benign Partial Epilepsy of Childhood however his Neurologist disagreed with that diagnosis due to his medical history (he was a 26 week preemie with a brain bleed while in the NICU which the neurologist believes had caused brain damage which has led to his seizures).  At that time the neurologist recommended he be put on Keppra.  We declined the medicine at that time since he had only one seizure and there still was a chance that this may have been a febrile seizure.

Yesterday, almost a year to the day of his last seizure, he had another one.  This one was very mild in comparison to the last one, though it wasn't associated with a fever at all, he was just eating breakfast.  He simply 'spaced out' for about 5 to 10 seconds and had a rhythmic head twitch.  Once he regained consciousness he was sleepy and took about a 30 minute nap but after that was his usual wonderful self.

Both his neurologist and pediatrician have 'strongly urged' us to put him on Keppra.  We just don't know what to do.  He has had two seizures a year apart, does that warrant medication?  I am just concerned about putting him on a medication that alters his brain when it is developing.  I have heard both good and bad things about Keppra and don't know what to do.  ANY advice would be helpful.

[sanguine_speed]

I can't tell you what to do, but I will share my story.

My son was 6 weeks early.

He had his first seizure at 18 months old.  He measured a fever when the paramedics arrived (we called as it was his first and we had no idea what was happening).  

Then, about once a month, he has had a seizure, sometimes with a fever measured afterward and sometimes without. 

We saw a pediatric neurologist who diagnosed him with epilepsy, but we are unconvinced since he does tend to get (viral) sick after the seizures where he does not measure a fever.  We also don't have a reliable thermometer, and we also are busy trying to comfort him post-seizure and don't really care to take his temp.  So the "non-fever" seizures mean no one took his temp.  The information isn't that useful anyway IMO.

We were prescribed medication and decided not to use it.  Here's why:

-we are not convinced he has epilepsy, and febrile seizures would be outgrown in a few years.  Either way, his seizures are not dangerous.

-if it is epilepsy, there is a strong likelihood that he'll outgrow that too, as there are childhood epilepsies.

-his seizures generally last less than five minutes (they're all convulsive, grand mal).

-he is now still only 3.  He is with a responsible adult at all times.  His seizures are not dangerous at this time. The danger comes from the risk of a fall if he is on a play structure and has a seizure for example.  But again, we are always with him.  Also, we've discovered after several seizures that there are observable changes in behaviour before his seizure and we can predict them moments beforehand.  For instance, we were swimming, and I 'knew' something was off.  I told the lifeguard my son was acting odd and may have a seizure.  10 minutes later, he did.  And he wasn't in the pool because I was paying attention.  If he had been in the pool, he would have been in arms reach and I would have caught him before he fell.

-In our opinion, The risks of the medication outweigh the risks from the seizure, no matter the diagnosis of febrile seizures or epilepsy at this point.

We may reconsider medications if his seizures become dangerous, or if he still has seizures when he is older and is unattended.  

Has your child had an MRI?

Good luck, I know it's a difficult decision.

[MusicCityMom]

He had an MRI done when he left the NICU 5 years ago but has not had one since - that MRI showed white matter damage around one of his ventricles.

I just got, literally, two minutes ago an e-mail from his school nurse saying he 'spaced out' during art class on Wednesday (the day before the seizure I noticed) which is very unlike him - which possibly could be another seizure.

I am just so frustrated because everyone is so blase about the whole thing.  I spoke to the neuruologist's nurse this morning and she was unhelpful.  I told her we had more questions about the medication and she said his next available appointment is 3 months out.

I am just so torn.  I know that the seizures are harmless in terms of his brain but now the possibility of him having them at school which affects his learning is troublesome.

I just wish some doctor would at least understand our concern about putting him on medication that affects his brain instead of treating it like we are putting him on vitamins.

Edited by MusicCityMom - 12/3/10 at 6:44pm

[raelize]

my dd1 had her first seizure when she has just turned 3.  it lasted 45 minutes and was a complex partial seizure.  she walked funny, made strange head movements, her eyes flicked side to side, it took us about 30 minutes to figure out what happened.  she also vomits as the seizure starts.  sometimes her right side twitches or moves, sometimes she makes chewing motions with her teeth.  the only seizure she ever had that hadn't been ended by medication was 45 minutes long.  her others have lasted as long as 15-20 minutes before we have gotten her to the emergency room.  seh had her second 13 months after her first.  after her second, which was in january 2010, we agreed to put her on medication. 

when she had her first, we went the CHildren's Hospital of D.C. after being transfered from our local county hospital.  they wanted to give her a lumbar puncture, because they said she had meningitis.  she had NO symptoms of meningitis, and so we refused that.  she never measured a temp, and she was 3 and 1 month at the time of her first seizure.  they wanted to say that it was a febrile seizure, but she wasn't sick, didn't have a fever, and had never had a febrile seizure. it is very very very uncommon to develop febrile seizures at age 3, usually they start when they are under 1, and then are outgrown by age 3.   so, then we did an EEG, which came back abnormal, they couldn't explain why, but seh had slightly abnormal activity on her left side of her brain.  so, then we did an MRI.  that came back totally normal. 

so, they chalked it up to wierd brain thing, but everyone hoped it wouldn't happen again.  exactly 13 months later, she had another seizure.  we agian went down to children's for a consult, we had another EEG, which had the same signature, but we didn't do another MRI cause everything was exactly the same, it had only been 13 months.  at that point we started tripleptal. 

the reasons we did were:

• she had 2 abnormal EEGs, which statistically increases the chances of another seizure
• this was her second seizure.  after 1 seizure, there is a 66% chance of not having another seizure.  after 2 seizures, there is a 66% chance of having another.
• there is data that shows that a child is more likely to outgrow seizures if they are being treated.  if seizures are not treated, there can be scarring and calcification on the brain, which will led to more seizures and less chance of outgrowing them.
• her seizures are life-threatening. although she is always with us, the longer a seizure goes, the less chance there is of stopping it and bringing them out of it.  her seizures are complex partial seizures, but they are also called status epilipticus - which means a very serious condition.  if you have this with a grand mal, you can die.  there can be serious brain injury.  we want to avoid brian injury and death.the best thing is to avoid them.
• although we were/are very concerned about side affects, trileptal is very well tolerated by kids, and doesn't require blood draws for monitoring. so far, she is crankier on it, but we just make sure she is sleeping enough (also important to avoid seizures)

although she was on tripleptal, she began having seizures every 3-4 weeks.  after her 5th, i realized that maybe she had celiac (i have celiac)  i did some research and found that the incidence of complex partial seizures are 2x that of the normal population.  celiacs who have seizures often do not respond to meds (like her) because we ar stimulating the seizure with gluten. 

so, once we realized that, we took her off gluten. in the last 7 months, she has only had 2 seizures - once when she had eaten gluten cake, and once when noodles at a restaurant were cross contaminated.

i was worried whenshe wasn't responding to the meds. although i was comfortable starting trileptal with the hopes of her growing out of her seizures, i didn't want her to end uptaking harder meds - especially if she didn't grow out of them. or what if the meds didn't work?

if your son has a benign childhood epilepsy then he will grow out of them.  he may not have anymore at all.  there are a lot of benign epilepsies.  what does he do during the day? is he at school? as the pp stated, there is always someone watching her son, so they can spot the seizures before they happen, but if your son is in school, is there a chance he could have one and be hurt? personally i would medicate, but i completely understand your hesitancy about it.  Keppra was a drug we discussed before we went gluten free when the increased trileptal wasn't stopping the seizures. 

we also have diastat - it is given rectally and it stops the seizure. so, we have only gone to the ER for ativan when the diastat hasn't worked fast enough or there was some other issue.  once she chewed up the side of her mouth and since i had called an ambulance, although she was asleep when they got there, i wanted her mouth checked in case she had hurt herself.

so, i would medicate, but i understand your hesitancy and it is a hard decision to make.

[beenmum]

 I would recommand you sit down and explain to the drs what your SPECIFIC fear of the meds are.

If you have only general icky feelings, then I thinnk you have to compare the ickiness of the seizure to the meds.

And maybe think about what would happen if he were not in your care if this happened again.

[beenmum]

 The major risks of seizures are not just falling. Aspiration and static seizures are also very common issues and can not be stoped b/c you are in arms reach.

My daughter aspirated and almost choked to death. We had to keep driving her to the drs and monitering her for fever (infection) and lung damage from the seizure.

I;m not judging you or your choice. I made the same one when we were waiting for a new EEG.I thought that b/c I was with her 24/7 she would be safe. But then the above happened and I realized that there were major danges that came from grand mals that I coudlnt stop just b/c I was in arms reach.

I was asked, do you walk more then 2 steps ahead or behind her, do you go to the washroom? DO you sleep?

SO I had to understand that there were risks I coudlnt change b/c I was in arms reach.

Again, just food for thought.

[sanguine_speed]

Originally Posted by beenmum 

 The major risks of seizures are not just falling. Aspiration and static seizures are also very common issues and can not be stoped b/c you are in arms reach.

My daughter aspirated and almost choked to death. We had to keep driving her to the drs and monitering her for fever (infection) and lung damage from the seizure.

I;m not judging you or your choice. I made the same one when we were waiting for a new EEG.I thought that b/c I was with her 24/7 she would be safe. But then the above happened and I realized that there were major danges that came from grand mals that I coudlnt stop just b/c I was in arms reach.

I was asked, do you walk more then 2 steps ahead or behind her, do you go to the washroom? DO you sleep?

SO I had to understand that there were risks I coudlnt change b/c I was in arms reach.

Again, just food for thought.

I also feel that the risks of the medication are greater than the risks of aspiration given the risks you mention:  i.e. sleeping or going to the washroom.  If there were no risks to the medication, I would absolutely use it because it would be best if my son had fewer seizures.  I would probably choose medications if my son had seizures that were presenting with more danger such as complex seizures or seizures that lasted longer than five minutes.

You have come to a different conclusion about the risks of medication versus risks of seizrues which is understandably coloured by your personal experience.  But just like any risk equation, just because it happened to you doesn't make it more or less likely to happen to me.  My son had a stomach condition that almost cost him his life, and that was a 1 in 1000 chance.  I understand we're not immune and that things do happen to you and to me, it's not always "somebody else".  But, I believe that the risks of medication outweigh the risks of my son's seizures.  That is my informed decision to make for my family.

The risks of anti-seizures meds aren't just "icky feelings" about them.  They are serious and real.  And for some families, the risks are worth the potential benefit.  For mine, they aren't.

[sanguine_speed]

Originally Posted by raelize 

although she was on tripleptal, she began having seizures every 3-4 weeks.  after her 5th, i realized that maybe she had celiac (i have celiac)  i did some research and found that the incidence of complex partial seizures are 2x that of the normal population.  celiacs who have seizures often do not respond to meds (like her) because we ar stimulating the seizure with gluten. 

so, once we realized that, we took her off gluten. in the last 7 months, she has only had 2 seizures - once when she had eaten gluten cake, and once when noodles at a restaurant were cross contaminated.

i was worried whenshe wasn't responding to the meds. although i was comfortable starting trileptal with the hopes of her growing out of her seizures, i didn't want her to end uptaking harder meds - especially if she didn't grow out of them. or what if the meds didn't work?

This is very interesting information; thank you for sharing it. 

[QueenOfTheMeadow]

It's such a hard decision to make. I made the decision to put my 9 year old on seizure medication for numerous reasons. He had grand mal seizures, not just partial or abscence seizures. He was 9 and I could not and didn't feel I should follow him all over the place at that age. His EEG was very abnormal and stayed that way.

Also, I have gone into status epilepticus due to a bleed in my brain. Basically, I could have seized over and over again until my blood pressure was so high that it basically would have overloaded all my systems and I would have died. So, my experience and the fact that his EEG was still all over the place made me decide that I wanted him on the meds. He's on the very lowest dosage he can be on and is completely under control.

In your situation, I don't know what decision I would make. Has he had a more recent EEG? Would you consider a trial of the meds to see how he tolerates them? Or are you more comfortable with wait and see? Maybe if you try the wait and see approach, you could look into the book Treating Epilepsy Naturally. I think we've been able to control ds's seizures with such a low dose of meds because we also use alternative therapies as well.

Whatever decsion you make, remember, you can change you mind! Good luck!

[melissa17s]

OP, have you asked the doctor for other medication options besides Keppra?  Maybe you could look at the side effects and see which you feel willing to consider.  Not everyone has the side effects or negative experience on medication, and you can rule out any you feel are to disturbing.    I wonder if the nurse is unwilling to discuss recent changes in your son's health,  maybe you should consider another neurologist to get a "2 nd" opinion, since you do not have access to current doctor.  I know that both our ped and neurologist would want to know, if ds had another clonic tonic seizure regardless of if he was medicated. 

We only recently realized ds was having seizures, but he has had them since he was 3 or 4.  He has had a very difficult time at school from reading and writing disabilities that are a direct result of the epilepsy.  He has also had memory and attention problems.  The medication has no been a silver bullet for us, but it is helping to some degree.  We are considering requesting  the neuro to reevaluate whether or not to stay on the his current med., stavzor, because he has had behavior regression and partial seizures.  We originally requested no medication, but the neuro encouraged us because ds's seizure were affecting his daily functions.  

It is hard to tell what is best, but I hope you find what works for your son.  

[gsmom]

First of all, hugs to you mama.  It sounds like your DS has had a busy journey already ;-).  I think when it comes to medicating our children, it is always a challenge to feel okay with that.  Something does not seem right about putting chemicals into these little bodies.  My littlest was supposed to be my "natural child" and when we got his medical diagnosis he became everything but that.  I totally understand the hesitancy to start medications based upon the side effects.  My son is currently on 5 seizure meds and has tried all but 3 of the seizure med options.  I stopped researching side effects after the first four.   His seizures are caused by abnormal metabolism, so that's a losing battle in and of itself.

Even with "mild" seizures developing brains can change as well.  I do not want to be disrespectful to your decision or sound like I am an expert.  I just know what our situation and story is and where we come from.  One neurologist told me that each seizure can disrupt the learning pathways that have been established so it's like starting over again.  Not that they can not be re-established.  We see these connections being completely disrupted with R, however he is having many many seizures in a day.   He is having many seizures that show up on an EEG that do not show up clinically as well.   I have a friend who's son had a fairly large seizure in the evening once, they hesitated to start him on a seizure med.  He has brain damage due to twin to twin transfusion syndrome.  They recently started a seizure med because a neurologist said their son was at high risk of having another seizure based upon his EEG pattern.  We have seen some really cool changes since they started it.  Although it is hard to say if his brain was just ready for those learning connections to happen or if it is because of the seizure med.  

Have you asked about other medication options?  When researching side effects, I also have tried to remember that if, in a study, one person had a side effect, that needs to be listed.  I have too heard good and bad things about Keppra.  Again, hugs to you mama.  It is not an easy decision.  When we have decisions like that, I think of Maya Angelou's quote "You did then what you knew how to do and when you knew better you did better."  Sending you peace for what ever decision you make. 

[MusicCityMom]

Thanks to all of you for your input and good wishes.  We spent a good hour and a half in our pediatrician's office last night going through all the pros and cons.  He was brutally honest with us about life with medication and the potentials of life without it.  I think my husband and I were just in denial about what the real situation was.  We kept rationalizing away his symptoms because we really didn't want to believe that he really was epileptic, but after what is more than likely two seizures within 24 hours of each other I think the writing is on the wall.

After a lot of soul searching and a good many tears we have decided to put him on the medication.  If we don't like what it does to him we will take him off and reevaluate again.

I am also glad to know that we aren't alone in all this.  For the last few days I have felt very isolated - while I have had some very sympathetic friends who have listened and offered their support I felt no one really understood what we were going through but through your posts I have realized that there are people out there struggling through with us.

Thank you.

[QueenOfTheMeadow]

Originally Posted by MusicCityMom 

Thanks to all of you for your input and good wishes.  We spent a good hour and a half in our pediatrician's office last night going through all the pros and cons.  He was brutally honest with us about life with medication and the potentials of life without it.  I think my husband and I were just in denial about what the real situation was.  We kept rationalizing away his symptoms because we really didn't want to believe that he really was epileptic, but after what is more than likely two seizures within 24 hours of each other I think the writing is on the wall.

After a lot of soul searching and a good many tears we have decided to put him on the medication.  If we don't like what it does to him we will take him off and reevaluate again.

I am also glad to know that we aren't alone in all this.  For the last few days I have felt very isolated - while I have had some very sympathetic friends who have listened and offered their support I felt no one really understood what we were going through but through your posts I have realized that there are people out there struggling through with us.

Thank you.

It sounds like you've really thought this through and made the decision that works best for your family.

[gsmom]

Hugs to you mama.  It is not an easy road to walk.  I hope that the medication helps and you are able to keep the seizure monster at bay.    

[anj_rn]

I know you have made your decision, but I would like to give your some reassurance.  Our DD has been on Keppra for 15 months, and we are not having any problems with side effects.  They also control her seizures well.  We have this agreement with our neurologist.  We do 6 months of meds, if she has not had a seizure, we repeat the EEG and then review the results and decide if we want to continue.  DD has not had clinical seizures (ones we could see), but her EEGs are still very abnormal.  We are on a low dose of Keppra, and we do not have to increase unless she starts seizing.  This has worked very well for us since the guidelines are clearly spelled out.  DD has a 24 hour EEG scheduled next month.  If we continue to show no seizures, we are going to do a trial of no meds, even if the EEG is abnormal. 

I will say that we did not have a choice in starting her on meds.  After her brain injury DD had status epilepticus (continuous seizures).  We have been conservative in pulling her off the meds, because we do not want to go back to the hospital.  We will have diastat rectal gel on hand if she starts seizing off meds.

[isisreturning]

It sounds like you already have made a decision, but I will weigh in for whatever it's worth.

Now, our circumstances are different, and by the time we needed to decide re: anti-seizure meds, DD had already had high dose chemo and radiation to the brain. So the thought of Keppra didn't really faze us by that time. She had a very lethal form of brain cancer at age 6 months and went through intense treatment for it. Weirdly, she didn't have her first seizure (complex partial) until about a month AFTER treatment ended.

We started her on Keppra the next day - low dose. She was on that for about 6 months I think - no more seizures that we could detect. We weaned her off and she had another seizure within 48 hours of it being completely out of her system. So back on we went - same low dose. Our neuro-oncologist said that her kind of seizures were like embers in a hearth - any little thing could make them flare up again into a full-blown fire; the Keppra keeps ashes over them so they won't flare up. She has been on that dose for about 18 - 20 months - no seizures.

As for problems - it's hard to say with her. She has severe language problems caused by injury to the language area of her brain (where the tumor was, and where the radiation was directed). She is fairly withdrawn and quiet. It's hard to say if that's her base personality or shyness from lack of ability to communicate well with others. It has never occurred to me to blame Keppra. She has a lovely spirit and is not sullen or aggressive. Her problems are very complex; until I read this thread I've never wondered if Keppra had anything to do with them - she has plenty of reasons for her struggles with a history of gigantic tumor, chemo, radiation, hospitalizations, trauma, eating aversion, and associated developmental delays. 

Just wanted to offer another story from a family with a child on Keppra - again, for whatever it's worth, we haven't felt it to be a problem.

[pregnant@40]

I could definitely be wrong, but isn't it true that, 1) febrile seizures do NOT lead to grand mals or abnormal EEGs, 2) seizures progressively cause brain damage in themselves, and thus it is dangerous to allow them to continue untreated, and, 3) the course can become more severe at any time? Just by the way, how was your son's second seizure characterized (ie. absence seizure)?

Best wishes to you, this must be quite frightening to go through as a parent.

[melissa17s]

Originally Posted by pregnant@40 

I could definitely be wrong, but isn't it true that, 1) febrile seizures do NOT lead to grand mals or abnormal EEGs, 2) seizures progressively cause brain damage in themselves, and thus it is dangerous to allow them to continue untreated, and, 3) the course can become more severe at any time? Just by the way, how was your son's second seizure characterized (ie. absence seizure)?

Best wishes to you, this must be quite frightening to go through as a parent.

Febrile seizures are associated with fevers or illness, but could confused with a tonic clonic seizure as they can be generalized and last for long time.  Also they are more common in children under 5.    

Some of the benign childhood epilepsies, such as the benign rolandic epilepsy do not require medication, and parents may not catch many of the seizures because they occur during sleep for the most part.  Few seizures cause brain damage even over time unless the person is in status epilepticus, but seizures can stop that area of the brain from being used so it may not fully developed or properly processing information because of the seizures.  Once the seizures are treated, then area of the brain effected can potentially function normally.  

[beenmum]

Seizures don not generally cause brain damage on their own. However, they can cause several other issues, such as Choking, respitory infections caused by aspiration, injuries from falls and falling objects and prolonged seizures or reoccuring seizures.

They can also affect memory development, the ability for the brain to retrieve information or store information, language delays and learning issues.

[anj_rn]

The seizure itself does not usually cause brain damage.  However, the impaired breathing (many kids breath hold during seizures) and/or possible aspiration can cause a hypoxic brain injury.  Also, the falling or hitting their head during a seizure can cause a traumatic brain injury.  Febrile seizures can be grand mal or petite mal.  They do not usually cause an abnormal EEG when the child is well, but the OP has a child with a hx of a brain bleed which CAN cause an abnormal EEG with or without sz.

we are currently in the same boat.  DD had a brain injury at 4 months and started seizing in the ICU.  She is seizure free w/ meds, but her EEGs are markedly abnormal.  We do not know if the seizures caused the near-SIDS and the abnormal EEG, or the brain injury caused the seizures and the abnormal EEG.