Is there anyone with a child with epilepsy?

[Clo]

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

 

[Clo]

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

 

[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.

 

[Clo]

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

 

[lilesMom]

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.

 

[lilesMom]

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 xxx

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

 

[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.

 

[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

 

[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 ;-)

 

[Clo]

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 xxx

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

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

 

[annanouska]

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

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

 

[Clo]

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

 

[Clo]

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

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

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

 

[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

 

[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

 

[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

 

[Clo]

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

 

[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

 

[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

 

[lilesMom]

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