absence siezure advice

[val34]

my daughter has absence siezures but they are getting worse sometimes she jerks other times she walks about like a zombie as if she is sleep walking she opens doors/drawers is this normal never heard of this b4

thanks for looking x

[brain]

You should speak to your daughter's Neurologist
or Epileptologist - whomever is treating her; there
could be various reasons why she's going through
this... but we are not Medical Doctors here and
are not able to provide you any response or
answers as we do not "know" your daughter's
progress or history or her chart. So therefore,
lies what I have implied above ... you need to
phone the Doctor as soon as possible and not
to wait until the next appointment.

[Crazy Monkey]

Hi Val

I am an adult living absence seizures, therefore I am constantly monitoring mine myself rather then relying on someone else.

As Brain said we are not medical doctors and cannot offer advice, but if you are noticing a change in your daughters seizures then you MUST contact your neurologist.

While I cannot advise you, I can relay my own experiences to you. My absences are gradually getting worse, but they seem to change forms and quantities all of the time. A normal day for me would be approx 50 absences, but out of the blue last Thursday I counted about 300 and I have no idea why, but this happens to me from time to time.

With my absences I don't just sit and stare which seems to be the stereotype, I regularly walk around zombied out. When I regain consciousness, I have often found myself doing silly things, sometimes I can't help but have a giggle at the things I find myself doing. I have from time to time performed the cupboard door opening trick, I tend to hold the door and keep swinging it back and forth, but I seem to pick on the fridge door more often, maybe I like the light??? I can have seizures where I sway or perform small jerks (especially around my mouth) I can feel myself doing it as the seizure is coming to an end.

Before the new activities, what used to happen during your daughters seizures?

[val34]

she was fine before her medication was controlling it completely however she came off it as specialist said they can outgrow it and only way to see was to take off which sadly she hasnt outgrown and now for some reason medication isnt working

i have left 3 messages for specialist but hasnt come back to me yet .. she went on ethosuximide when she was about 2 and half and was having about 30-40 a day but they were just standard where she would stop doing anthing stand still and eyes rolled up to back head whereas now sometimes jerking and walking around they also are lasting longer ... she is only just turned 6 and it seems so unfair just hope we get back under control

thanks for repies

[Crazy Monkey]

I was always told "I would outgrow them" as a kid, I obviously didn't, but my understanding is that is very common to grow out of absences.

If Ethosuximide is no longer working, you really need to push extra hard to see your neurologist, as your daughters meds need to be checked.

Without the control of Ethosuximide the seizures are going to appear worse. If I miss a dose by a couple of hours, my seizures are longer and feel more powerful. I have never had control over my seizures, my meds purely cut them down by about 50%.

[val34]

that must be so hard for you having so many , does it stop you working and doing things

my daughter does horse riding but i am wary as scared hurting herself , she went swimming lesson tonight and watched like hawk im worrying more as she had bad one sunday night and fell off chair and knocked a tooth out (the tooth was loose and thankfully just a baby tooth )

x

[Crazy Monkey]

Apart from the obvious things like driving, go karting etc, the seizures don't stop me from doing things, I have a good job, my mum owns a horse which I ride, having absences just means I have to keep an extra eye on safety and take a few more precautions.

It is only natural, you are going to watch her like a hawk and worry for her safety, she is lucky to have you.