Is there anyone with a child with epilepsy?

[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

 

[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

 

[emilyjade]

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

 

[lilesMom]

Thanks hon xx

 

[annanouska]

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

 

[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

 

[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

 

[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.

 

[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..

 

[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