childhood absence epilepsy

[Anonymous]

I posted this in the General Discussion forum, but was advised to post here. Thanks in advance:

my son was just diagnosed with CAE (doctors do an EEG to confirm it). We are considering the way forward, which will likely be medication, but my son is only 4 and the most common reason to medicate, according to most docs we've consulted, is to prevent future cognition/learning acquisition problems.

I am wondering if anyone on this listserv knows families with a diagnosis of CAE that have chosen--with a doctor's advice/consent--to "watch and wait" before medicating. His daily life remains largely unaffected, but he does have these spells when he's tired. If we medicated, we would likely use Depakote 2x daily.

Thanks for any help.

[Anonymous]

Anonymous wrote:I posted this in the General Discussion forum, but was advised to post here. Thanks in advance:

my son was just diagnosed with CAE (doctors do an EEG to confirm it). We are considering the way forward, which will likely be medication, but my son is only 4 and the most common reason to medicate, according to most docs we've consulted, is to prevent future cognition/learning acquisition problems.

I am wondering if anyone on this listserv knows families with a diagnosis of CAE that have chosen--with a doctor's advice/consent--to "watch and wait" before medicating. His daily life remains largely unaffected, but he does have these spells when he's tired. If we medicated, we would likely use Depakote 2x daily.

Thanks for any help.

Are you commited to this as a correct diagnosis? Without a diagnostic test?

Our neurologist was leaning towards absence seizures as a possible diagnosis for DS and we did the full 3-day EEG (3 of the longest days of my life). I was convinced (had gone well beyond the acceptance stage of grief into having actively researched anti-seizure meds) that our DS was epileptic. Turns out he was not. Was there sub-clinical irregular activity? Yes. However, after a course of medication (Levetiracetam - aka, generic Keppra) we determined that it didn't have a beneficial effect. DS's abnormal activity didn't rise to the level of significance such that medication had a positive effect. The downside (negative side effect was hyperactivity) outweighed any potential benefit.

We still do other therapies (principally OT), but medication has been decisively ruled out. I only wish I hadn't allowed the Levetiracetam to go on as long as I did.

[Anonymous]

my ds was just dx with absence seizures in dec. Originally we had thought that it was sensory overload but the eeg was textbook of seizure activity. For us, it was getting in the way of school activities so we decide to go the meds route. The primary reason was that we noticed that the seizures were getting longer and deeper. For instance, he was starting to stumble and have accidents during seizures. GL!

[Anonymous]

I assume your child will have an MRI. I don't want to alarm you but a friend of my DC's was diagnosed with absence seizures and it turned out she had a brain tumor. She's fine now, but its a possibility you should eliminate.

I have a sibling who had absence seizures for years that were undiagnosed and untreated and eventually blossomed into full blown grande mal seizures. This is the danger of not treating the absence seizures. But since you are working with your doctor on this, I'm sure its something he's keeping in mind.

[Anonymous]

Not to alarm you but you'll find...as you see on this board already... that seizure meds and children's responses to them can be all over the map -- seizure meds can control seizures or cause additional/new kinds of seizures; they can prevent cognitive delays, but more often they dull the neurotransmitters to the point of causing delays. My point, is that you really have to do your research on all the different kinds of treatments. You could certainly take the wait and see approach and often absence seizures are outgrown. You could also cut out likely triggers as much as possible -- wheat, dairy, fatigue, etc.

Good luck

[Anonymous]

Please avoid topomax. I never showed actually seizure activity on a EGG. I have pseudo tumor celebri which means fake brain tumor.

While in college I was put on Topomax I lost my memory, I have worked with children on this same med they seem to display some of the same things I did.

I moved away from college and havent had the issue, I would avoid topomax everyone I know who has been on it has had problems, vision problems, migrains which I suffer on a weekly basic anyhow. I lost my memory I couldnt remember anything. Avoid topomax read all the side effects.

I hope your son is getting better. I had a friend in college who had blank stare seizures he had a brain tumor. He is no longer with us.

[Anonymous]

New poster here - I'm a neurologist. The responses people posted here were interesting, and some were misleading. True childhood absence epilepsy is never caused by a brain tumor, so OP, no need to be alarmed. The child who had a brain tumor likely had a different type of epilepsy (localization-related, or focal) -- the spells caused by this type of epilepsy often LOOK like "petit mal" but the EEG is clearly not the hallmark EEG that is seen with absence epilepsy. I'm sure your neurologist will order an MRI, but children with absence epilepsy and no history of other neurologic problems (developmental delay, etc.) have normal MRI's almost 100% of the time.

In terms of whether you should medicate -- it's really up to you. Since your child is not yet in school, the seizures may not be disruptive. When he starts school, though, he will likely need medication because you don't want him to start missing things, getting behind, and feeling bad about himself. Furthermore, children with absence epilepsy often also have generalized tonic-clonic seizures ("grand mal seizures") along with the staring spells. If your child has these, he should absolutely take medication, because these seizures can cause injury to the child (hitting head, etc.) and they also damage the brain. The small staring spells are not thought to damage the brain.

Depakote can cause side effects, as all medications have side effects. It's uncertain how your child will respond... he may not tolerate the medication, or he may be just fine. Another medication your doctor could try would be ethosuximide (zarontin) -- along with depakote, this medication is first-line for absence. Topamax isn't used for absence seizures (in response to the poster who warned against it).

Good luck to you and your child. Most children grow out of these seizures completely and they are intellectually and neurologically normal, so I'm sure everything will be fine for your DC. I know it's scary though... but hang in there, and ask your neurologist lots of questions.

[Anonymous]

You sound like a great neurologist! You are the first neurologist who seems to agree with me that grand mal seizures should absolutely warrant medication. We had a hard time with our neurologists because they seemed to think that my child didn't need medication, despite an abnormal EEG and several untriggered grand mal seizures. Really frustrating.

Since my child started taking medication 3 years ago he has had less seizures and bigger time intervals between them.

[Anonymous]

10:02 again. of course if a child has seizures as a result of a tumor, it isn't absence seizures. This family I know were told their daughter was having absence seizures but further testing revealed the tumor. Very unlikely, it is true, but it has to be ruled out. I know two children very well who have had brain cancer (and both survived!).

[Anonymous]

13:52...great post! You sound just like my ds's neurologist! Thanks for weighing in!

[Anonymous]

Anonymous wrote:13:52...great post! You sound just like my ds's neurologist! Thanks for weighing in!

I'm the neurologist PP. Thanks!!! And to the above poster regarding a brain tumor - I did not mean, in any way, to attack your previous post. I just wanted to the OP to know that your post was somewhat misleading because you stated something like "I know a kid who was diagnosed as having absence seizures and was found to have a brain tumor, so make sure your kid gets an MRI." Really, the child you referenced was MISDIAGNOSED as having absence (because he/she probably had focal seizures, NOT absence -- the two seizure types often look so similar that it's hard for even the most astute neurologist to tell what the type is until he/she sees an EEG.). The OP said that her child has EEG-confirmed absence, so she should not be worried about a tumor.