Well, she passed out again <sigh>

[Valgal]

Eden came home from Tn with a cough, it hasn't gone away and yesterday she developed a fever so I took her to the dr. today. The nurse wanted to run a flu and strep test, so you know they swab up your nose and down your throat. I guess her body thought that was too stressful and as soon as the nurse left Eden, who was sitting next to me thankfully, said, "Uh oh. I think I'm gonna pass out. My ears are doing that buzzy... "

Zonk. Totally out. Thankfully she did not have a seizure this time, but when she came to she threw up and I couldn't quite get her to the sink in time.

Dr. is NOT happy with letting this go on. He wants me to type up every episode I can think of, including every detail I can about the event. He wants to examine it along with her history and the events that happened right after she was born.

My poor baby. No wonder she never wants to go to the dr! (or eye doctor, or dentist...)

[jacinda]

Aw, poor girl! I'm glad your doctor is going to thoroughly investigate it. Fingers crossed he finds the cause.

[nietis]

Oh no!!
I really hope the Dr. figures out something about your girl...

[kristijoy]

OH gosh...hope they find out something out so they can help her!

[carrie1977]

I think it's good that he wants to look into it more...hopefully they can help her with it.

[olivesparrow]

Scary!! Poor thing (and poor you!) - hope you get an answer soon =)

[mrsashbaugh]

Oh wow...glad the Dr. is wanting to look into it more and find answers to hopefully help your daughter. Hugs!

[lauren grier]

Yikes poor kid. I'm glad the doctor is really working to figure out what Is going on. Hopefully you get answers ASAP

[Valgal]

The frustrating thing the more I think about is that her first episode was when she was 10 hours old. We were alone in the room and she had, what was later called 'seizure-like activity.' It clearly looked like a seizure to me, but since no staff was in the room...

So instead of going home we went to an out of town hospital that had a NICU (she was taken by ambulance ) for 4 day where they performed EVERY TEST UNDER THE SUN on her and never came to any conclusions. Even after we went home we had to keep going to different hospitals for even more tests. It was discovered by a pediatric cardiologist that she had 3 separate heart murmurs, one of which was so severe they couldn't believe she didn't have a massive hole in her heart.

So, basically that's how her life started out. We saw the cardiologist once a year for a check up and after about 3 years they said she was fine we don't need to come back. She was fine till 4 years ago when she had that simple finger prick during a check up and passed out then had a seizure. An OBVIOUS seizure. It was terrifying! A year later she had to have some blood taken and she passed out, had a seizure, then was fine. That summer she went to a church camp and there were some stressful events happening and she passed out and threw up. About 6 months later she had some teeth pulled and she passed out. Last year her heart started acting weird again. She wore a monitor for a week and AGAIN, they never determined anything. 2 weeks ago she had her eye dilated at the eye doctor, passed out, seized and threw up. Yesterday she had the flu and strep tests, passed out, seized and threw up.

ARGH!!!! How can all these dr.'s not figure this crap out? All we're ever told is that they can't find anything and she is clearly doing ok. I am SO FREAKING GLAD the dr. wants me to type up every detail I can think of because I feel like no one listens to me after they test her and determine that she is 'ok'

You have probably stopped reading 3 paragraphs ago, lol! But I feel better getting this all out and it's reminded me of a few things I need to add to my report for the dr.

[lauren grier]

I know there are non epileptic seizures, so that may be why all those original doctors were not very helpful when they were running all their tests on her. What a scary mess :[

[nietis]

That just sucks! Those previous doctors are really not helpful I hope this Dr really figures something out!

[Valgal]

Thanks. It helps to have a place to vent

[Valgal]

Originally Posted by nietis

That just sucks! Those previous doctors are really not helpful I hope this Dr really figures something out!

Sherly, I just noticed your 'dreaming to be a sugar babe' part of your siggy. That is CUTE.

[Shawna Clingerman]

That sounds so scary and stressful Valerie! I so hope they can find some answers for you soon

[DawnMarch]

When my DS was younger, he had both epileptic and non-epileptic seizures. His non-epileptic seizures were stress-induced but what your daughter is experiencing sounds different from what he had since he never really had physical manifestations other than the seizures (like, he never passed out or threw up or anything). Still, I wonder if it could be stresselated since it seems to happen when she goes to the Dr. and she has some sort of "scary" treatment.

[KristinCB]

could it be that she is having panic attacks?

[Valgal]

Originally Posted by KristinCB

could it be that she is having panic attacks?

I have been wondering if that could be coming into play here. I am bipolar but I don't really have anxiety issues. I've only had one significant attack. She said that at random time she feels her heart racing. She says it feels like her heart is in her throat. I don't know what that means, but it's the only way she describe it. Of course, none of that happened the entire week she had the heart monitor on

[ashaw]

That is what anxiety feels like, your heart is pounding and in your throat and like your throat is closing. Almost like you are dying. I have nearly passed out before from anxiety. She could have extreme anxiety reactions and nothing to do with her heart ?

[Lyd]

So scary! I was also wondering if she's having panic attacks. I'm glad the doc wants to get to the bottom of it. Hope you get it all figured out soon! Keep us posted. (((HUGS)))

[nietis]

Originally Posted by Valgal

Sherly, I just noticed your 'dreaming to be a sugar babe' part of your siggy. That is CUTE.

Awww... thanks I hope I'm working my way to it

[Valgal]

Originally Posted by ashaw

That is what anxiety feels like, your heart is pounding and in your throat and like your throat is closing. Almost like you are dying. I have nearly passed out before from anxiety. She could have extreme anxiety reactions and nothing to do with her heart ?

That is very interesting! I've always gone straight to the heart because of significant heart murmurs. Those murmurs have stunted her growth. Something about where her body is using it's energy. She is a tiny little peanut of a girl. Anyway, I'll mention the anxiety possibility in my report to the dr. Thanks.

[lauren grier]

yeh def mention it-- anxiety/stress/difficult situations/ etc are big triggers for non epileptic seizures

[rach3975]

Oh, no! I'm glad the doctor wants to follow up and figure out what's going on. Hopefully there are enough incidents now that they can determine a pattern and get you some answers.

[Nettio]

I was going to suggest anxiety too since there seems to be a clear pattern of it happening at medical appointments which is a common anxiety trigger. If she's getting worked up enough it could spike her blood pressure & heart rate which made lead to her passing out. It's also explain why the testing wouldn't show anything wrong.

[ellasspace]

oh no I have a sister who has suffered from Seizures for years and they have ran every test in the book and still have to figure it out. So very frustrating. Her's continue to grow worse she is now having grand mal seizures. I hope and pray you get some answers soon.

[crystalbella77]

sooooo scary!! I really hope they can figure it out. I have severe anxiety and have come very close to passing out. It's a really scary feeling...and mine is dr triggered a lot. Sometimes I can't even drive myself places because I get really really sick from the anxiety. I throw up and shake and things. I'm thinking of her and praying they can find some answers. I feel so bad for her!!! And for mama. It's never easy seeing your kiddos going through things like that . :'(

[Jjriward]

Poor thing! And how scary for both of you! I hope you get some answers soon!!

[Saar]

How is she doing now?

[Valgal]

She's doing fine. We have our follow up appt later this afternoon, actually.

[Saar]

Good luck with your appointment today!

[Julie Billingsley]

Hope everything went well at the doctor. Praying for your daughter!

[monia13]

Poor thing I hope doctors can give you some answers soon.