Soooo confused now...anyone help??

[proudestmummyever]

Hi

My DS1, 2, has severe epilepsy due to a genetic disorder, bn on phone to consultant today as having more seizures than normal

He said there is a type of epilepsy that if the child's bum is touched they can have a seizure,(ie.nappy change, getting dried after bath etc) or it could be a "PROVOKED" epilepsy, as Jack mainly has them when getting nappy changed, after a bath, gettn clothes on, all when he is lying down, if it is a provoked type then he can grow outta them!!! But we were told before it is a hard to treat epilepsy and he would be dependant on us for life etc...but too scared to get my hopes up, would be brilliant, magnificent if Jack had a type he could grow out of ...any1 heard of these types

Seein consultant on 21st april, and meant to say that if "provoked" epilepsy(when somethin brings seizure on) it doesn't respond to meds, Jack is on 3 types, but consultant sed they nd to either change meds but if provoked epilepsy no point keepin puttin drugs into him if not gonna work, and he should grow outta them......

CONFUSED

Thts wat i got when I googled it too fiofio!!

N thts NOT Jack!!

But he does have seiures mostly whn gettn bum changed or after bath, gettn dried, or lyin down has any1 heard of that???

Used to b upon waking, so it is obv PROVOKED by somthing, ie triggered, I just dunno, but would be great if he outgrew them

"Reflex Epilepsy Syndrome
Reflex seizures are ?objectively and consistently demonstrated to be evoked by a specific afferent stimulus or by activity of the patient?.

Reflex epilepsy syndrome is a syndrome in which all the epileptic seizures are precipitated by sensory stimuli.

Reflex or stimulus-sensitive or triggered or sensory-evoked epileptic seizures are synonyms denoting epileptic seizures that are consistently elicited by a specific stimulus. ?Reflex? is the preferred name in the new ILAE diagnostic scheme."

from www.ich.ucl.ac.uk/clinical_information/clinical_guidelines/cpg_guideline_00036/Appendix_1.doc

If you google "Reflex epilepsy" lots of explanations come up that might fit your circumstances

I am scared to google it.....is it bad??

Omg ths sounds like Jack!!! Thanku lou031205!! Will nd to say to consultant!! Jack has had status seizure when light gets darker outside, and we were driving, and the passing street lights brought it on I always thot!! He nearly always has a seizure lying down!! Very out of character for Jack to just have a seizure outta the blue, an when we were on hols last year....Jack fitted the min we practically got there and had bn great controlled, so I thought the change in environment did it......ths is interesting, and loud music and talking and light darker in club on hols made him fit terribly!! OMG! It all ties in....nevr knew ths existed!!!!

ANY1 ELSE HAVE DC LIKE THS?

BUMP

ANY1?