I need some advice. My son had a fainting seizure in February and in July. Long story short, his EEG was abnormal for the left temporal lobe area. MRI was completely normal. So we go to a specialist in Atlanta and they tell us that we need to put him on Keppra and he needs to take it or he will have developmental delays. My question is, does this drug improve the brain some who? Or just stop seizures? My thoughts are really why should I put my baby on medicine for possibly 2 seizures a year that he will probably outgrow??? I don’t know what to do and my husband is like, he is taking the meds! I have learned with doctors you have to do your research so I just want to be sure before we start it. I would rather deal with a fainting spell or 2 per year than put a chemical in his body if I can help it.
Keppra - what should I DO?
- Thread starter Bethereen
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
- Messages
- 3,548
- Reaction score
- 96
- Points
- 213
Bethereen
It might be 2 per year now but that does not mean they will not increases in frequency as time goes by. Yes it is possibable to out grow epilepsy for some that does not guarantee your son will be one of the lucky ones. Sorry about that but its true.
However as far as I understand keppra has no direct impact on development, from my point of view it is wrong for any doctor to say such a thing, I would look for another opinion. You need to remember your baby as well in all this, do not forget he has to go through each seizure. Nobody likes a chemical in the body but there may not be a choice, however there are diets you should look at.
It might be 2 per year now but that does not mean they will not increases in frequency as time goes by. Yes it is possibable to out grow epilepsy for some that does not guarantee your son will be one of the lucky ones. Sorry about that but its true.
However as far as I understand keppra has no direct impact on development, from my point of view it is wrong for any doctor to say such a thing, I would look for another opinion. You need to remember your baby as well in all this, do not forget he has to go through each seizure. Nobody likes a chemical in the body but there may not be a choice, however there are diets you should look at.
- Messages
- 3,548
- Reaction score
- 96
- Points
- 213
To answer your question, for me 1 seizure is enough.
- Messages
- 5,552
- Reaction score
- 32
- Points
- 213
Since your son will be going to a specialist, make sure they get all the details. And here is more info to think about:
http://www.epilepsy.com/learn/seizures-youth/about-kids/diagnosing-seizures-children
OR
http://www.epilepsy.com/learn/seizures-youth/about-kids/conditions-confused-epilepsy
http://www.epilepsy.com/learn/seizures-youth/about-kids/diagnosing-seizures-children
OR
http://www.epilepsy.com/learn/seizures-youth/about-kids/conditions-confused-epilepsy
Remember - epilepsy is just a word that means that someone has a tendency to have recurrent seizures. First seizures are often not treated because many people have just one seizure in their lives, and most of them do not go on to have a second seizure. However once someone has had 2 seizures, the chances that they will have a third (and more) gets much much higher - it's about 75%. Add your son's abnormal EEG to the mix, and it is very very likely that he will continue to have seizures. No one can say now if it will happen next week, next month, or in a year, but statistically it is very likely that it will happen at some point - not a certainty, but very likely.
If he is having tonic-clonic seizures (it sounds like he is) they are extremely dangerous if he happens to be on a bike, on the stairs, in the bath, etc. So avoiding that type of seizure is extremely important. Moreover, there is some evidence that the more seizures you have, the more the brain is likely to have seizures - it's called "kindling." So your son's best chance of ultimately being seizure and medication-free is to nip this in the bud now.
I do understand your reluctance to have your son on medication for something that seems to be only a sporadic issue. My daughter's first seizures at age 15 were 3 tonic-clonic seizures in one afternoon - which was completely traumatic and scary and of course we put her on medication (Keppra) right away. But after I did some reading I learned that 3 seizures in one day are statistically the same as one seizure, and so I questioned the diagnosis of epilepsy. She stayed on meds and had no more seizures for 7 months, but was having a bad reaction to the Keppra (it is generally well-tolerated, but she had some existing anxiety issues that worsened on it), so her doctor suggested coming off of the medication to see if she might have been misdiagnosed. We had 7 great weeks without medication - and then she had another seizure, and we now we had no more questions in our mind about the epilepsy diagnosis and her need for medication! And then unfortunately things got much worse over the next few months: she had multiple tonic-clonic seizures, began also have simple partial seizures, and is now on 2 medications without complete seizure control. So you just don't know how this is going to progress, and there is no way to tell for sure based on what has happened so far.
I am grateful that we did try taking her off medication because I stopped questioning whether or not she had epilepsy. It was horrible and upsetting when her seizures returned - and we were very lucky that I was close by when it happened so that she did not injure herself - but at least we had clarity about what we needed to do. It sounds to me like you just don't have that clarity for yourself yet, and I do think that is very important.
Everyone's situation is different. For instance, a 4-year-old child is very different than a 15/16-year old: you have much more control over his activities, and can keep an eye on him constantly if you need to, while my daughter needs her independence, wants to drive, will be heading to college soon, etc. So you may be more able to safely "take a chance" and postpone medication.
But you also need to grapple with the fact that your son does have epilepsy (he has had 2 unprovoked seizures) and that his seizures + his abnormal EEG make the likelihood of more seizures very high. Do your research, ask the questions you need to ask, and then make the best decision you can. And good luck - this is a hard road, and nothing any parent expects to deal with!
If he is having tonic-clonic seizures (it sounds like he is) they are extremely dangerous if he happens to be on a bike, on the stairs, in the bath, etc. So avoiding that type of seizure is extremely important. Moreover, there is some evidence that the more seizures you have, the more the brain is likely to have seizures - it's called "kindling." So your son's best chance of ultimately being seizure and medication-free is to nip this in the bud now.
I do understand your reluctance to have your son on medication for something that seems to be only a sporadic issue. My daughter's first seizures at age 15 were 3 tonic-clonic seizures in one afternoon - which was completely traumatic and scary and of course we put her on medication (Keppra) right away. But after I did some reading I learned that 3 seizures in one day are statistically the same as one seizure, and so I questioned the diagnosis of epilepsy. She stayed on meds and had no more seizures for 7 months, but was having a bad reaction to the Keppra (it is generally well-tolerated, but she had some existing anxiety issues that worsened on it), so her doctor suggested coming off of the medication to see if she might have been misdiagnosed. We had 7 great weeks without medication - and then she had another seizure, and we now we had no more questions in our mind about the epilepsy diagnosis and her need for medication! And then unfortunately things got much worse over the next few months: she had multiple tonic-clonic seizures, began also have simple partial seizures, and is now on 2 medications without complete seizure control. So you just don't know how this is going to progress, and there is no way to tell for sure based on what has happened so far.
I am grateful that we did try taking her off medication because I stopped questioning whether or not she had epilepsy. It was horrible and upsetting when her seizures returned - and we were very lucky that I was close by when it happened so that she did not injure herself - but at least we had clarity about what we needed to do. It sounds to me like you just don't have that clarity for yourself yet, and I do think that is very important.
Everyone's situation is different. For instance, a 4-year-old child is very different than a 15/16-year old: you have much more control over his activities, and can keep an eye on him constantly if you need to, while my daughter needs her independence, wants to drive, will be heading to college soon, etc. So you may be more able to safely "take a chance" and postpone medication.
But you also need to grapple with the fact that your son does have epilepsy (he has had 2 unprovoked seizures) and that his seizures + his abnormal EEG make the likelihood of more seizures very high. Do your research, ask the questions you need to ask, and then make the best decision you can. And good luck - this is a hard road, and nothing any parent expects to deal with!
- Messages
- 5,979
- Reaction score
- 989
- Points
- 268
No med or dose is guaranteed to make someone stop having seizures. It may only decrease the number of seizures or the strength of them. For example they will go from having grand mals to having simple or complex partial seizure. For some people it can stop them from having seizures but they will always have epilepsy.
Many times drs try to lower the dosage of the med or even get them off of it if they can, but this doesn't always work.
I agree with this very much.
I'm not that familiar with childhood epilepsy and if the 'grow out' of it. Someone else can probably give you more information about that.
Well, since his seizures have started when he is just 4 the chances are much higher than they would be for someone whose seizures began in adolescence or adulthood. And there are several childhood epilepsy syndromes that almost always remit before the teenage years, such as Benign Rolandic epilepsy and childhood absence epilepsy. However, if they suspect that these are focal seizures the chances of "growing out of it" are much smaller.
So, like everything else with epilepsy, it depends!
His "seizures", I hate to call it that bc it was not like one that I have seen. I know I must be in denial or something but...he is out like 4 or 5 seconds. And afterward, he plays the remainder of the day like normal. It is not like he sleeps or is tired, just normal afterward. That is why I worry about meds, because it was not that bad. Or both were not that bad bc he knew it was fixing to happen and came to me. The side effects scare me more than his type of seizure...