I am SCARED!

dawnc78 · August 2010

I think DD (5) has epilepsy...

Over the past few weeks, she has been having episodes of absence...she'll be in the middle of a sentence or doing something and then she'll go completely blank...her body will stay standing or sitting or whatever...get a little slacked but not like a limp noodle... She looks off in a very vacant way and does not respond to me calling her name or touching her or snapping in front of her face...

When she does it it can take anywhere from 5-30 seconds for her to come back around... When I ask if she heard me calling her she says no and she remembers what she was saying right before she stopped and can continue her thought/sentence/activity.

It has happening with increasing frequency over the past week and I have asked other people to observe her when she has them to get a somewhat objective oppinion...One lady told me she thought H. was sleep walking and my BiL said that she was definitely not there anymore... I am finally at the point where I KNOW that this is not normal distraction or daydreaming and I need to call the doctor...and of course it is the weekend

So I set out on the internet to do a little investigating and one of the sites talks about other symptoms like lip licking and eye blinking...these are something that I have noticed DD doing when she is having an episode (not always) and I can recall going into her bedroom at night before I go to bed and finding her lip smacking and raising her eybrows on MANY occasions...so now I am wondering if she has been having these in her sleep for much longer than I even realized!!!

I AM FLIPPING OUT RIGHT NOW!!!

Skruffy · August 2010

I'm so sorry. How nervewracking! Another thing that is often misdiagnosed as epilepsy is long qt syndrome. You may want to have her checked for that too. Good luck! Sorry you have to wait to find out. That's hard.

bebemama · August 2010

((((((((Hugs))))))) That is scary. Sorry you guys are going through this.

bebemama · August 2010

Also, I would think a suspected seizure in a child would warrant a trip to the ER. So maybe if you wanted answers sooner you could try that. I am sure it would be scary for her though.

Emjay221 · August 2010

ER is useless for that type of seizure, if that is in fact, what it is.

Call the pedi in the a.m. and ask for a referral to a neurologist, asap.

LaLaSweets · August 2010

bebemama:
((((((((Hugs))))))) That is scary. Sorry you guys are going through this.

More (((( hugs))) sorry and I hope you can get all the answers that you are looking for

DandR · August 2010

A. Step away from google.

B. Call your doctor IMMEDIATELY and get into a neuro.

DandR · August 2010

also, my friend who's DD has similar seizures OFTEN goes to the ER when they start happening more frequently or when they look different, BECAUSE to get into a neuro, THEN get the testing, etc, etc, often takes weeks/months....but the ER can do the tests that day usually and send to a neuro.

I would consider the ER (after talking to the pedi).

JOEBunny · August 2010

Sorry. I would try to get the episodes on tape, which helps the doctors a lot. Even if they are siezures, they can be caused by so many things, that I would not worry too much until you get a diagnosis. Hope it is really nothing. Don't worry yourself with the internet stuff, it could really be so many things.

LanaM · August 2010

How scary! best wishes to your family!

femmegem · August 2010

(((hugs)))

teg · August 2010

ditto PPs--we thought DS had a seizure one night last year, and while seemed completely fine afterwards, we called the nurse at our pedi's office and they insisted we bring him to the ER. it was a very long night there, but it was so reassuring to have him checked out. the neurologist fit us in asap (within a week). gl--it is a scary thing! best to you and your family.

REOM · August 2010

I am so sorry to hear this. My DD#2 had/has absences seizures, she is medicated for them now.

Definitely try to get them on video. Also, if it happens again, take her to the ER immediately. They will hook her up to an EEG, b/c they can often detect seizure activity in the brain waves after it happens. Or sometimes they happen in clusters, so they can catch it before it happens again. You really want them to be able to catch it on the EEG so you aren't dealing with, 'but we don't see anything wrong...' Then doing the sleep deprived at-home EEG is harder.

I know it is so scary But really, it will be okay. They will ask you what she was doing before/after it happened, how she was behaving, if she had a fever, any medications, what were her eyes doing, and what the duration was.

HUGS please keep us updated!

dawnc78 · August 2010

Thanks everyone!!!

I've been going crazy getting in touch with doctors and labs and everything...she is scheduled for a sleep deprived EEG tomorrow morning and we'll go from there...I am still scared but feel more informed (thanks in part to all of you). I have uncovered a deep family history of Epilepsy and I think I pinpointed when they started (she had a fever about a month ago that took a while to go away....incidentally I'm going to be really upset with SIL for exposing her, knowingly, to her sick kid that gave her the fever). She has 1-5 that I have seen per day...I only caught one on tape but I am pretty convinced that that is what they are...I am just hoping that she is one of the 80% of children that outgrows it...the scariest part is the implications for her future (teen-adult years).

Thanks again for all your support and info! I really appreciate it, and keep sending it if you think of anything that may be useful for us in this trying time.

~Dawn

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