Never get use to it....

[babs0217]

Well this morning started out anything but normal. Lauralee woke up cranky as could be and very whinny. I'm not sure what was wrong I mean she ate well at dinner last night and slept right through the night. I manged after fighting with her for 20mins about what she wanted to eat to get her to eat breakfast and take her meds which was another fight in itself. She's gotten now to where she doesn't want to take them. She was still cranky lots of screaming for no reason and saying go away went in the bedroom jumped on her sisters bed and BAM!!!! Alexis (her sister) started yelling, "MOM she's having a seizure MOM hurry up." Sure enough I went in the bedroom and there was my precious baby thrashing and convulsing. Just staring off in to space with her arms and legs just a thrashing. So I did all the basics made sure she wasn't going to hurt herself put her on her side and proceeded to talk to her. I'm not even sure if she can hear me. I'm not exactly how aware she is of whats going on. But, I keep talking maybe it's a way to keep me calm I don't know. I mean lauralee has had seizures since she was six months old and I can't even count how many she's had and it never gets any easier. I mean I'm at the point now that I don't freak out and go completely balistic and call an ambulance every time I wait and time them just like the doctor says to and as long as she comes out of them before the time limit and is ok I don't take her to the hospital. But, every time is still so scary. I think maybe it's the fear that this might be the one she doesn't come out of. I know that people live with epilepsy and have pretty normal lives in fact I dated I guy in highschool that had it, but the possibility is still there and it scares me. Lauralee and her sister are my life and I don't know what I'd do if I lost either one of them. Does it ever get easier? I mean will I always feel this way?

 

[epileric]

Sorry to hear about all that you're going through. Since I"m the one with E I can't say I've felt like you do but I do sympathise. There's a recent thread where it was discussed how someone was "off" before a seizure but I can't find it now. Maybe recognizing behavioural changes before a sz will make it easier for you so that they're more expected.

 

[epileric]

Wooops

There's a recent thread where it was discussed how someone was "off" before a seizure but I can't find it now.

Sorry, that was on another board.

 

[Birdbomb]

Don't know if it gets easier but it does become our routine.

 

[Meetz1064]

Hi there!

I don't remember if I've welcomed you or not, so just in case I haven't........WELCOME TO CWE!

I'm sorry you're going through a rough spot right now with Lauralee, but might I suggest keeping a journal? Start writing everything down, if you haven't already. Patterns will hopefully begin to emerge that might help you and the doctors to help your Lauralee more.....and it just might be that her behavior as of late was an aura of sorts......

Meetz

 

[RobinN]

nope .. it just isn't fun... not one bit

 

[Bernard]

... She was still cranky lots of screaming for no reason and saying go away went in the bedroom jumped on her sisters bed and BAM!!!!...

Stress is a major seizure trigger. When she has recovered sufficiently I suggest asking her questions in a fashion to get her to think about and "discover" what she needs to do instead of just telling her.

... and proceeded to talk to her. I'm not even sure if she can hear me.

When Stacy and I first got together and she had her first couple of TCs, I believe that she understood I was present during her post-ictal phase (not while actively convulsing). Her recovery was much faster when I talked calmingly and reassuringly to her and put my hands on her to let her know I was there.

Nowadays, it doesn't seem to have any effect. lol...

... Does it ever get easier? I mean will I always feel this way?

We went through a pretty rough time when Stacy's seizures were completely out of control. She was having TCs once a week like clockwork with atonic (drop attack) and myoclonic (jerk) seizures just about every day in between. When she wasn't seizing, she was a zombie vegetable - sleeping on the couch all day and barely able to speak in complete sentences. Looking back, I'm not sure how I stayed sane through it all.

But, we persevered and continued trying to find a solution and have now managed to get the seizures mostly under control (except for around her monthly period). It does get much, much easier when you can get the seizures under a bit of control.

 

[skillefer]

I'm the one with the seizures...so I wouldn't know. My hubby has kind of gotten used to it, I think. My hubby uses a cool damp washcloth, and he says that helps me to come out of it faster and easier. I'll take his word for it, as he's the one observing.

 

[brain]

Hi and here's some info:

:hello: Babs

It's a frightening experience; especially when it's
your precious loved one that's undergoing through
it all. However, once you gain more knowledge and
understanding and insight ~ not that it will give you
calm assurance, but it will make you "Stand Up and
Fight" and become an Advocate like many other
Parents frequently become; they grow tired of this!
Some parents have babies and children that have
seizures every 3-5 minutes, 100 times a day, and
many of them, their child resides in a Hospital more
than at home! They worry, they fret, and so much
more and the hate for Epilepsy just grows upon
them.

While true, some children outgrows it, some don't.
Unfortunately, I'm one of those who didn't outgrow
it; but I too am tired and hate Epilepsy with a
passion ... however, I am an Online Advocate,
with a International Resource site (click on Head
Storms below), with more coming and information
to be added gradually along the way.

CWE is also a Powerful Resource Site as well -
providing alternatives, latest information, updates,
and so much more in addition to having a forum.

ONE THING is:

• Epilepsy is not a psychiatric illness
• You will not swallow your tongue
• Do not let your precious baby be wearing
  tight fitting garments (choke hazard) or
  too loose garments either
• Talk to your Doctor about a special pillow
  that will prevent suffocation during a seizure

So much learning, but once you become adapted,
and the Epilepsy Foundation Chapter, if one is
available near you; you can PM me and I can
find out if one is available in your area - will be
able to assist you - OR - consult your Neuro or
Epi who is treating your child for the Epilepsy
Foundation to speak with you in dealing with
this. They will teach you and/or send you info
regarding what you need to know and do.