# 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


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## 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!


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## Clo

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


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## lilesMom

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


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## 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


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## sophxx

Hope his results come back ok


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## 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


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## lilesMom

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


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## Clo

lilesMom said:


> 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


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## 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


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## 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:hugs:


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## 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


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## Clo

blakesmummy09 said:


> 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:hugs:

Thanks hun. I really appreciate this  x


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## lilesMom

That's great hon. 
Great news x


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## Clo

lilesMom said:


> 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


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## 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 ;-)


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## lilesMom

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


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## Clo

lilesMom said:


> 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


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## 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


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## 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.


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## Clo

lilesMom said:


> 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

50:50 odds is pretty good. I hope he does grow out of it hun.

Connor is absolutely fine. He is a star and Brilliant at taking his medicine and actually hasn't had another siezure since he went on it xxx


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## Clo

BrandiCanucks said:


> 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.

That is shocking! Saying that, at least she is under a neurologist because my lo is just under a pediatrician. They haven't said for definite that he has epilepsy but since he went into status epilepticus and was fitting for an hour while in hospital while they tried lots of drugs to stop it, they are treating it as epilepsy xxx


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## BrandiCanucks

Good thing they're treating it! They can be so damaging, especially the status.

My daughter's under a neuro because she also has microcephaly and a neurometabolic disease.


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## Clo

BrandiCanucks said:


> Good thing they're treating it! They can be so damaging, especially the status.
> 
> My daughter's under a neuro because she also has microcephaly and a neurometabolic disease.

Aww bless her. I hope they officially diagnose it for her soon.


It's scary because it was at night when he was in bed. I dread to think what would have happened if I hadn't checked on him :-( Thankfully I did though and the hospital managed to stop him fitting after almost an hour. Luckily it doesn't seem to have done any damage x


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## lilesMom

BrandiCanucks said:


> 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.

for lots of epilepsy u actually have to catch an event for abnormal eeg. 
impossible in some cases, u would have to hospitalise 
the definition of epilepsy is more than 2 seizures so its weird he cant say she has it when he can say she has seizures. 
strange .
in ireland my lo meds are covered cos its a speacial longterm illness. 
are u ruled out from any entitlements cos he wont diagnose?
hope not.


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## lilesMom

Clo said:


> lilesMom said:
> 
> 
> oh good hon.
> xx
> 
> 50:50 odds is pretty good. I hope he does grow out of it hun.
> 
> Connor is absolutely fine. He is a star and Brilliant at taking his medicine and actually hasn't had another siezure since he went on it xxxClick to expand...

thats fab hon. 
its easily controlled so which is another thing which makes him more likely to outgrow it. fingers crossed for ye xx
when my nephew was young he had 2 pretty big seizures, 
he never went on meds and hasnt had one since, he is 23 now :)


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## BrandiCanucks

Hers are pretty few and far between, so she's not medicated except to have PRN Ativan. She mostly has absence seizures, but she's had a few complex partial's as well.


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## BrandiCanucks

This was one I accidentally caught on video. Based on this one, he says she has seizures, but because an EEG has never caught one (HAS caught abnormal activity that was NOT a seizure though), he says he can't diagnose epilepsy in her medical records until an EEG picks it up.

https://www.youtube.com/watch?v=eWNJcB33p2U


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## lilesMom

Thank God they re scarce hon.
Irritating they wont diagnose officially though.
My lo has multiple seizures a day for last 2 months but his neurologist has still only seen videos this time.
Last time he was in hospital cos was spasms.
They r. More serious. 
Docs did see them.
It woyld be pretty good coincidence if they happened in doc office ;-)


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## Clo

lilesMom said:


> Clo said:
> 
> 
> 
> 
> 
> lilesMom said:
> 
> 
> oh good hon.
> xx
> 
> 50:50 odds is pretty good. I hope he does grow out of it hun.
> 
> Connor is absolutely fine. He is a star and Brilliant at taking his medicine and actually hasn't had another siezure since he went on it xxxClick to expand...
> 
> thats fab hon.
> its easily controlled so which is another thing which makes him more likely to outgrow it. fingers crossed for ye xx
> when my nephew was young he had 2 pretty big seizures,
> he never went on meds and hasnt had one since, he is 23 now :)Click to expand...

Thanks hun. That's good to hear  Givese me hope xxx


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## annanouska

:flower: my lo was referred to a neurologist 6 weeks ago as he has stopped talking for 6 months. I took him to dr as he had 3 big absence style seizures at nursery. He had done it a few times at home but I thought he was concentrating :cry: 

He just stopped and went completely vacant no response to name touch trying to jingle a toy etc just like he wasn't there. The nursery ones were 5 mins on two occasions and 2 mins on another. At home he had one for 5 mins and little ones for 20 seconds. 

Gp wanted us to be seen sooner but so far nothing so waiting until 8april. I'm e expecting to be told to go home and Palmed off but im pretty certain it's absence seizures. My sister had them from toddler hood to 7/8 also have an uncle on maternal side who had severe epilepsy. 

I never seem to capture on a video which is frustrating too. 

Hope you didn't mind me jumping In here. I don't feel he has a severe form of epilepsy at all but do hope he gets the help he needs :thumbup:


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## Clo

BrandiCanucks said:


> This was one I accidentally caught on video. Based on this one, he says she has seizures, but because an EEG has never caught one (HAS caught abnormal activity that was NOT a seizure though), he says he can't diagnose epilepsy in her medical records until an EEG picks it up.
> 
> https://www.youtube.com/watch?v=eWNJcB33p2U

I see what you mean, though I suppose complex partials are harder to diagnose than tonic-clonic which are blatantly obvious what they are x


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## Clo

annanouska said:


> :flower: my lo was referred to a neurologist 6 weeks ago as he has stopped talking for 6 months. I took him to dr as he had 3 big absence style seizures at nursery. He had done it a few times at home but I thought he was concentrating :cry:
> 
> He just stopped and went completely vacant no response to name touch trying to jingle a toy etc just like he wasn't there. The nursery ones were 5 mins on two occasions and 2 mins on another. At home he had one for 5 mins and little ones for 20 seconds.
> 
> Gp wanted us to be seen sooner but so far nothing so waiting until 8april. I'm e expecting to be told to go home and Palmed off but im pretty certain it's absence seizures. My sister had them from toddler hood to 7/8 also have an uncle on maternal side who had severe epilepsy.
> 
> I never seem to capture on a video which is frustrating too.
> 
> Hope you didn't mind me jumping In here. I don't feel he has a severe form of epilepsy at all but do hope he gets the help he needs :thumbup:

Of course we don't mind. I hope that your doctor takes you seriously. Definately try to video them if you can xxx


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## Clo

Ended up spending yesterday afternoon in a&e and all last night on children's ward. They thought that Connor was having complex partial seizures yesterday, except he kept being sick...they eventually decided that on top of his epilepsy he also has Cyclical Vomiting Syndrome which is a form of migraine where you are violently sick and really exhausted but don't get the headache that you usually get with migraines. 

I'm not 100% sure that it's not related to his epilepsy but his symptoms did fit CVS. xxx


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## lilesMom

Vomiting or releasing bowels or pee can be part of a seizure for some people .
Migraines are also linked to aeizure. 
Can be a warning sign for some of impending seizure.
Hope ye r ok xx


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## lilesMom

Annaonouska I presume u jnow tovkeep a seizure diary. 
Write when they happen
How long
Describe um.
What they were doing before , during and after.
Any warning signs.
Any possible trigger. 
Sleep. Tiredness . Lights. Food etc.
Do def try to video too 
Best of luck.xx


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## Clo

lilesMom said:


> Vomiting or releasing bowels or pee can be part of a seizure for some people .
> Migraines are also linked to aeizure.
> Can be a warning sign for some of impending seizure.
> Hope ye r ok xx

Thanks hun..it's very stressful not knowing what's going on for sure x


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## emilyjade

Hi all, just found this thread! 
My daughter has just turned three on Wednesday, we went to a appointment about her Raynaud's and mentioned that she blanks out frequent but doesn't respond. They've said they think it's absent sezures, she's been for an EEG and waiting on the results of these. Today is the only day she's not had a seizure (to my knowledge) in 2 weeks.
I was told by the consultant that the EEG can come back clear even though she has these episodes. My question is if it does come back clear but they still try her on meds to help stop them, would they have a negative effect just incase she didn't have the epilepsy? So many things to think about and I'm at a loss with it all. 

Any advise or experience would be amazing xx


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## lilesMom

Hi hon. 
Sorry to hear ur dd isn't well xx
All meds hve side effects but most are mild if at all.
If meds stop blank spells u will hve ur answers xx
Unfortunately sometimes it takes trial like that to see xx 
Eeg may give u answers too hon xx
Best of luck xx 
Ask away anything and if we can help we will xxx


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## lilesMom

Clo
It is so hard when ur in the dark. Xxx
Hope they figure things out for ye xx


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## emilyjade

Thank you, it's all a little raw at the moment. The worst one she urinated and didn't understand why she was wet afterwards, she's also tipped forwards on a swing. They have done an ECG and a echo for the Raynaud's to check it's not her heart before they put her on meds for that too. It's all the waiting for answers and appointments! Xx


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## lilesMom

Hugs hon. 
It's tough on them and us xx
My lo is 9.5 months so at mo he isn't likely to hurt himself during one.
He has been having 2-5 a day for 2 months ish now again. Third bout of um in his life.
Trying to get a handle on this bout now.
Last 2 bouts meds took care of. 
Switching meds at rhe mo.
My lo had a stroke so is more likely to hve seizures cos of that.
Epilepsy varies so much for people.
My mom has epilepsy nd has been mostly controlled for all of my life by meds.
Hope u get answers soon. X
It does get easier cos u get more used to it.
And hopefully it gets way easier cos meds will work xx


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## emilyjade

Gosh he's still so young, I hope you find the right meds asap xx


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## lilesMom

Thanks hon xx


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## annanouska

:hugs: thanks for all the support ladies. I'm keeping a diary but its hard to spot at times apart for, the bigger ones. He doesn't have them evy day as far as I know and after. The last bigger set he is a much happier child very odd. Not long u til his appointment now tho x


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## lilesMom

Simon gets happy afterhis big ones too.
Like he has relief it's out of the way
Maybe tgey feel funny before um and better after x


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## Midnight_Fairy

Have you looked on the Cerebra website? I recently guided my neighbour here as her DD was recently diagnosed. She said it was a help x


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## avidwriter15

yes we do. My son also had a stroke at birth (27weeker) and had a grade IV bleed - now because he is missing 45% of his brain he has infantile spasms and myoclonic seizures.


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## avidwriter15

the only time I have seen my son smile is right before a seizure.. he smiles really big and looks completely happy like he might laugh and then he goes into spasms..


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## lilesMom

Aw hugs avid writer .
My lo had a stroke at birth . Full term more or less though.
Has right sided hemiparesis cp.
Also has had infantile spasms and now has focal seizures.
Some similarities in our lil guys history xx


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