Is there anyone with a child with epilepsy?

[Clo]

My ds is 2.5 and had 2 seizures a month ago, the second of which he went into status, and is now on sodium valproate while we wait for his EEG appointment.

Is there anyone else with experience of living with siezures in a toddler? xxx

 

[BlueHadeda]

My son has/had epilepsy. He was diagnosed at age 5, but looking back, I'm pretty sure his (atonic) seizures started when he was 4 at the most, maybe even earlier. He was put on lamactrin, and then years later on topomax. When he was 12, his EEG's came back clear, so he was taken off his medication. He hasn't had a seizure (that we know of) since. He's turning 13.

We were extremely lucky. His epilepsy was idiopathic, he never had a grand mal and he seemed to have outgrown it all now. I know how hard this is, though. Adjusting to awful medication side effects, having your whole world turn upside down. Trying to keep a balance at not spoiling him but not disciplining when it was the medication causing the behaviour, etc. It was a couple of very hard years. The website epilepsy.com meant alot to me in those years. I used to chat online with other mommies and they kept me sane and I learned so much from them.

Good luck!

 

[Clo]

Thanks for your reply hun. That's exactly how I feel. I'm glad your son has stopped having siezures. xxx

 

[lilesMom]

My baby has it
He had a stroke ar birth
Not at toddler stage yet though
Hugs x

 

[Clo]

Thanks hun. That must be so hard for you dealing with it in a baby. I find it hard enough with a toddler *hugs*

He had his EEG last week so just waiting on results now. xxx

 

[sophxx]

Hope his results come back ok

 

[lilesMom]

I spend a lot if time staring at him to see if normal movement or normal day dream ;-)
He is a good little boy though .
It doesn't seem to phase him when he does hve seizures.
He has had infantile spasms and partial seizures.

Waiting is hard. Hope they get back to u soon.
It's good news though to wait a bit.
First eeg fir lo.
I got pgone call to be admitted next morn.
So no news can be good xx

 

[lilesMom]

Just noticed u hve 2 kids.
They both hve lovely names ;-)

 

[Clo]

Just noticed u hve 2 kids.
They both hve lovely names ;-)

Thanks hun

That's good that his siezures don't seem to bother him. Have they said if they are likely to stop over time?

They are a bit slow in the hospital here so even if it was bad news it would probably take forever!

xxx

 

[lilesMom]

They don't know if he will hve it as an adult.
He has bigger chance of having it cos of his stroke
But he also coyld grow out of it.
Fingers crossed for good news for u xx
We hve neurologist in morn to talk meds ;-)
If it was very bad I'm sure u should know by now x
Hugs.
Docs can be wicked slow.
All blooming paper work x

 

[blakesmummy09]

i dont hava a child with it (as far as i know yet) but am an epileptic myself, i have photosensitive epilepsy and grand mal seizures and was on sodium valporate until 13. ive had it for the last 15 years so if theres anything you wanted to ask hun from an epileptics view or anything feel free. hope everything goes well with the appointment x

 

[Clo]

Just to update, his EEG came back normal so I'm just waiting to hear from his consultant as to what the next steps are. I know that they said originally that he would be on Sodium Valproate for 2 years, no matter what the EEG showed and if he had no more seizures in that time then they would look at weaning him off it and see what happens x

 

[Clo]

i dont hava a child with it (as far as i know yet) but am an epileptic myself, i have photosensitive epilepsy and grand mal seizures and was on sodium valporate until 13. ive had it for the last 15 years so if theres anything you wanted to ask hun from an epileptics view or anything feel free. hope everything goes well with the appointment x

Thanks hun. I really appreciate this x

 

[lilesMom]

That's great hon.
Great news x

 

[Clo]

That's great hon.
Great news x

Thanks hun. My Gp said that it doesn't mean that he doesn't have epilepsy but it does mean that he is more likely to grow out of it...don't know how true that is but it gives me a little bit of hope

Hope you and your lo are well xxx

 

[lilesMom]

It's def true.
There are different kinds of epilepsy.
My lo first time had what's called west syndrome.
It has a constantly abnormal eeg.
It's very severe and can cause all sorts of problems.
This time he us having seizures but his eeg was pretty normal.
( his never is 100% normal cos he had a stroke)
It doesn't mean he isnt having seizures, it means his brain waves are normal in between
Which is obvs much better ;-)

 

[lilesMom]

Did he docs ever mention doing a ct scan or MRI to look fir acause? Xx

 

[Clo]

Did he docs ever mention doing a ct scan or MRI to look fir acause? Xx

I am still waiting to hear from his consultant about whether or not they are going to do an MRI. (we got the results from our Gp because I asked him about it and he phoned the consultant but I think we are still supposed to see the consultant too) xxx

 

[lilesMom]

oh good hon.
lots of times cause is never found but always better to be safe and check it out just in case.
if cause isnt found its actually a better sign weirdly
makes um way more likely to outgrow it.
my lo simon has 50:50 chance os having it or not having it later cos of his stroke.
im not sure if this bout of seizures changes that odds.
prob does but no point worrying about something that may never happen
plus if he did have it later it is manageable .
hope all goes well at your consultant app.
how is ur lo now? xx

 

[BrandiCanucks]

My daughter's seizures have NEVER been picked up on an EEG, but she does have them. Her neurologist acknowledges she has seizures, based on video evidence, but has said until the EEG confirms, he can't diagnose it in her medical records, which personally, I think is ridiculous.