Seizures?

[crunchy_mommy]

My 2.5yo DS has some sensory issues & social/emotional delays... now he just started having some weird neurological thing... it looks like seizures or something but it could just be a tic. I don't know. I'm kind of paranoid now. He has an EEG scheduled in a few weeks (ughhh why do we have to wait so long?!) I guess I'm wondering whether this could be connected to his sensory/sleep/emotional issues???? I am kind of lost. The seizures/tics themselves are really not that bad (though scary at first, plus I'm afraid they'll get worse, and they seem frequent!) but I'm more concerned about what they could mean in the context of his other issues. And are these things the neurologist would consider or are they just going to focus on what his EEG shows??? This is a whole 'nother realm for me and I'm just nervous.
Edited by crunchy_mommy - 8/4/11 at 6:34pm

[melissa17s]

Hello, my ds has epilepsy and we have done a number of eeg's in the past year.  Eegs are only part of the process of dxing epilepsy (seizure disorder).  I have to say, I am surprised they are not trying to get your ds in sooner than later for the eeg.  It is best to have the eeg during the  seizures or close to when they have occurred.  In addition to eeg, they may take a cscan and or an mri to rule out injury or tumor.  I frequently read up on info at this site.  A lack of sleep can cause a seizure even in a person without a seizure disorder, but it is not unusual for epileptics to have seizures related to sleep.  

[crunchy_mommy]

I know, I don't understand why they wouldn't want to do the EEG while he's still currently having small (possible) seizures... Maybe it's because of the type, that if they are seizures they aren't particularly dangerous ones? It's really frustrating & scary to just kind of do this 'wait & see' thing. Now I'm freaking out about possible brain damage or something. Can that happen??? If he's not having them anymore when we do the EEG, would it be a useless test?

He won't nap anymore, even though he needs to, so I don't know if he's getting a bit sleep-deprived??? He did seem tired when this started happening -- though not more tired than usual for a no-nap day -- and hasn't yet caught up on sleep (schedule was thrown off by spending all night in the ER the other day). Maybe they will go away once he's well rested.

They didn't mention an MRI or anything. *sigh* I guess I'm not as calm about all this as I thought.

[SpottedFoxx]

Time for a second opinion and now.   If you can't get an appointment, next time your son has a seizure, take him to the emergency room (preferably at a children's hospital if you are near one).   Some times it's the only way to get immediate care.  {{{hugs}}}

[melissa17s]

Usually, seizures by themselves are not dangerous, but there are exceptions (go to the er if it lasts longer than 5 minutes or if you are concerned he is aspirating or not breathing).  Secondary injury is a risk, such as seizing in a pool could lead to drowning, so you should always make sure someone is watching your ds around water.  Watch out, too, for urban legends on how to treat; never put stuff in the mouth of someone seizing or allow someone else to.  

I would start contacting your ped and neurologist to try to get either the date changed for the eeg or perhaps the location, if they can not accommodate any sooner.  The dr.'s may not be aware that you have to wait so long and they could help speed up the process.  

Have they run any blood tests?  They should be doing that, too, to rule out illness.  One other question, what was your dc's temp when he was having seizures.  If he had a fever, then it could be febrile.

[crunchy_mommy]

It wasn't febrile seizures and they aren't the convulsive type (maybe that's why they felt it was OK to wait a few weeks for the EEG???) They haven't done any bloodwork, I will bring that up with our doc, but he was examined by a couple doctors/ER. We are on the cancellation list for the EEG but there are 2 people ahead of us so it looks like we are just going to have to wait another week or two. I guess I am OK with that since they didn't (yet) get more severe than the first time, and he's only 2.5 and very clingy and high-needs so he's never unsupervised for more than a couple minutes and certainly not swimming alone.

So now they seem to have stopped, I haven't seen it happen in a day or two (it was several times a day for a week or so) so I don't know if it was a one-time spell and he'll be fine now, or the homeopathics we were giving him helped, or if he's just had a couple 'good' days (ironic considering how miserable he's been the last two days ) and they will resume again??? And I'm wondering if the EEG will be at all useful if he's still no longer experiencing the issue when appointment day arrives???

And, do they really expect him to sleep during part of the EEG??? Because I can rarely get the kid to sleep even in familiar & comfortable environments, never mind somewhere new & with wires hooked up to him that I know he's going to want to pull off and all... I can try nursing him down if they let me, but even that could take a long time and the EEG is only scheduled for an hour. Any tips with that?

[joensally]

Can you try to videotape it the next time it happens?

[crunchy_mommy]

Yes, we did get a video of it!

[melissa17s]

Crunchy_mommy, I think you need to start contacting your regular ped. each time your  ds has a "seizure".   Postictal periods (time after the seizure) can be as bad or worse than the seizure.  Many experience tiredness and some get headaches.  On rare occasion, my ds has Todd's paralysis on his right side for up to a couple hours after the seizure.  You need to have a doctor that you can consult with.  Until you are working with a neurologist specialized in seizure disorders in children, your ped is the best bet.  You will need to also tell them all ways you are trying to treat this at home, such as the homeopathics, which are unlikely doing anything for seizures.  

As far as sleeping during the eeg, did they tell you that he needs to be sleep deprived?  Sometimes, the instructions are sleep deprived because they are more likely to catch a seizure.  Seizures are more frequent in people with problems sleeping.  This means a lot of work on your part, and maybe your ds.  You need to keep him up past his bedtime and wake him up much earlier than normal, maybe like 4:30- 5:30 am.  Do not let him nap between waking and eeg.  Then, when you go in for the eeg, he may sleep or not, but his brain waves will be more likely to misfire because of lack of sleep.  If you can, bring your ds's own blanket and pillow; we have found the sleep lab at our hospital somewhat uncomfortable.