2nd Episode of Fainting w/Convulsions/Siezure (my daughter)

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Originally Posted by oobladi I'm glad that your getting some answers. It sounds like you've got a good Doc that wants to make sure he's covered all of the basis. Good luck! Thank you and yes.
Oh...and just so everyone knows....brushing or fixing her hair is not necessarily what will make her faint....if/when her body is in a fainting state....hair-grooming will onset it. Does that make sense? In other words, we could brush Cassi's hair for 24 hours and not have her faint.

She's been briefed about how important it is to sit down right away when she feels it coming on. We sure dont' need a head injury added to all this.

 
Originally Posted by kwitter Thank you and yes.
Oh...and just so everyone knows....brushing or fixing her hair is not necessarily what will make her faint....if/when her body is in a fainting state....hair-grooming will onset it. Does that make sense? In other words, we could brush Cassi's hair for 24 hours and not have her faint.

She's been briefed about how important it is to sit down right away when she feels it coming on. We sure dont' need a head injury added to all this.

That makes perfect sense. Excellent idea in preventing head injuries. I don't know if you normally brush her hair in the bathroom but maybe move to a less dangerous room. I'm sure you already thought of that though.
 
Originally Posted by kwitter Ok...so busy over here...here's our update.....
Cassi had her appointment today with a Pediatric Nurologist. Here’s what he is 99% sure she has: Situational Syncope (fancy wording for ‘fainting’ with siezure related activities).

BUT here's the killer.....her’s is the Hair-grooming Syncope. How funny is that….not funny, but imagine the little teasing we’ve already come up with…â€well guess we got to shave your head is allâ€â€¦â€¦(kidding of course).

So we have a couple more tests to rule out the worst case senerio's...but the Specialist is pretty certain that she's got the above (Situational Syncope).

She will have a Sleep Deprived EEG (yep another but this time sleep deprived) a EKG and an MRI oh and then a fasting blood test. Then when those come back fine….the doctor is 99% sure it’s the Situational Syncope like he believes it is. But to ease everyone’s mind, and his own….he wants to run the tests to rule out the others.

AND yes….both episodes happened after or whiling doing Cassi’s hair. 2 years ago, I was fixing cassi’s hair when she fainted. He said, she will grow out of it…BUT this most likely will NOT be the last episode before she grows out of it.

So…….that’s our update.

wow I never heard of this, will definitely read up on it.sooo from what you say she has...it could be much worse, right? it´s good news that she might grow out of it and that it´s not epilepsy or worse.

how do you feel about knowing the diagnosis. and how does Cassi feel?

 
Originally Posted by Andi wow I never heard of this, will definitely read up on it.sooo from what you say she has...it could be much worse, right? it´s good news that she might grow out of it and that it´s not epilepsy or worse.

how do you feel about knowing the diagnosis. and how does Cassi feel?

There are all kinds of 'Situational Syncope' actually. The ‘Hair-grooming Syncope’ is an uncommon type of situational syncope among adolescent females; it is often followed by brief seizure activity [igarashi et al., 1988; Lewis and Frank, 1993].
Actually....I feel releived....but not until the other tests come back fine. Then we just have to take it day by day or year by year. Never telling when the next might hit. Cassi is fine with it....atleast it's not something worse. Me, I'm still dumb founded....I mean I beleive the doctor, but I'm happy they are doing the other thorough testing as well to rule the rest out.

Thanks for everyone's kind words. Friday, August 4th is her next and hopefully final set of 4 more thorough tests...AND YES....I'll be posting those results as well.

Thank you all for your caring, kind and concerning words....it really helps me alot to know how awesome this ring of MUT friendship really is. BIG LOVES!!!!

Originally Posted by oobladi That makes perfect sense. Excellent idea in preventing head injuries. I don't know if you normally brush her hair in the bathroom but maybe move to a less dangerous room. I'm sure you already thought of that though. Yes...we've thought about that as well. She actually usually does her hair in her room. She now, knows the bathroom is very small and has many HARD things in there that she could hurt herself on if she fell. Heck it may not even happen again for another 2 years....heck by that time, I sure hope she remembers how and what to do when she feels it come on.
 
Wow! That's mighty interesting Kelly! I'm glad she's okay! I couldn't imagine having to go through something like that! I've had a friend who had a sleep deprived EEG, and I think the worst part about it was having to stay up! I'm glad you're closer to finding out what's wrong! While I "hope" that's what's been causing her to faint, I also hope she bypasses it quickly! Please be sure to keep us informed!
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Originally Posted by kwitter Actually....I feel releived....but not until the other tests come back fine. Then we just have to take it day by day or year by year. Never telling when the next might hit. Cassi is fine with it....atleast it's not something worse. Me, I'm still dumb founded....I mean I beleive the doctor, but I'm happy they are doing the other thorough testing as well to rule the rest out.

yeah I´m sure you can relax a bit when the final test results come back. there´d be nothing worse than knowing something is wrong but not knowing what exactly it is.
 
Wow...I don't know how I missed these updates!!

I'm happy to hear that you have a doctor who's not just writing it off as a "stage".
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I've never heard of the condition, so I'll be reading up on it as well. If you are concerned that the time lapse between fainting spells would be too long for her to remember...just "dry drill" with her. Just walk up behind her and say, "What do you do when you feel like you're going to faint?" And, then she DOES the action (preferably sitting on the floor...not a chair, right?). The more she does it, the more it will become second nature when it happens.

I'm glad that, overall, everything is well. It's funny because I was just wondering how you and your daughter were doing while I was doing Yoga this morning (I was holding the Warrior pose and then this thought just smacked me in the forehead...). So, I'm glad that all is well.

Definitely keep us updated...

I do have one question, though...you said that one of her fainting spells, she wet the bed. Is that a part of the condition, as well...or just a timing thing? Just wondering.

Anyways...I'm still sending you lots of hugs and positive energy!!!

 
Kelly,

Yeah!!!! Finally getting somewhere!! But how wierd is that with the Hair Brushing thing???? Does it have to do with the blood vessels? Oh, now I just want to look the dang thing up out of curiousity.

 
Oh Kelly, I'm so sorry to hear about this!NOT that it's terrible, life-threatening news or anything, but you are such a protective and wonderful mother, I know you must feel terrible that anything should be happening to one of your children like this, a thing that seems also beyond your control. JUST wanted to add how sorry I am you are going through this terrible stress, and that your daughter Cass is as well.Please P.M. me should you ever feel like talking or venting, and that I feel certain,as well, that working with such a good doctor,and with the care of such a devoted mother, your daughter's stable health will be returned to her.Your whole family is firmly embedded in my prayers.

 
Originally Posted by VenusGoddess Wow...I don't know how I missed these updates!!
I'm happy to hear that you have a doctor who's not just writing it off as a "stage".
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I've never heard of the condition, so I'll be reading up on it as well. If you are concerned that the time lapse between fainting spells would be too long for her to remember...just "dry drill" with her. Just walk up behind her and say, "What do you do when you feel like you're going to faint?" And, then she DOES the action (preferably sitting on the floor...not a chair, right?). The more she does it, the more it will become second nature when it happens.

I'm glad that, overall, everything is well. It's funny because I was just wondering how you and your daughter were doing while I was doing Yoga this morning (I was holding the Warrior pose and then this thought just smacked me in the forehead...). So, I'm glad that all is well.

Definitely keep us updated...

I do have one question, though...you said that one of her fainting spells, she wet the bed. Is that a part of the condition, as well...or just a timing thing? Just wondering.

Anyways...I'm still sending you lots of hugs and positive energy!!!

The bed wetting this, has happened twice now....BUT it could be total coincidence. We don't know if she had an episode in her sleep or not.
As for the dry drillin'....yep, been doing that. Thank you. I really have drilled it into her head how important it is to be intouch with her body as well....how she feels, over exerted...tired, upset tummy...anything...just to take it easy and sit...JUST IN CASE. Thanks!

Originally Posted by Elisabeth Kelly,Yeah!!!! Finally getting somewhere!! But how wierd is that with the Hair Brushing thing???? Does it have to do with the blood vessels? Oh, now I just want to look the dang thing up out of curiousity.

Yep....so far with this diagnosis...still boggling and weird to say the least. I want to thank you for your support Elisabeth and all your help...oh and heck felt like I bombed the water challenge thing...so thank you so much for keepin it running!

Originally Posted by SierraWren Oh Kelly, I'm so sorry to hear about this!NOT that it's terrible, life-threatening news or anything, but you are such a protective and wonderful mother, I know you must feel terrible that anything should be happening to one of your children like this, a thing that seems also beyond your control. JUST wanted to add how sorry I am you are going through this terrible stress, and that your daughter Cass is as well.Please P.M. me should you ever feel like talking or venting, and that I feel certain,as well, that working with such a good doctor,and with the care of such a devoted mother, your daughter's stable health will be returned to her.Your whole family is firmly embedded in my prayers. Thank you so much, I'll surely do that! Your words are so kind and uplifting...man, sometimes when I hear your words I almost feel like this awesome super mom or something....well you know what I mean. So thank you for seeing this in me, makes me feel I"m obviously doing something right.

Originally Posted by KathrynNicole
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Kelly!
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Thanks sweetness...man I've had some bumby past few days/weeks. I appreciate you and everyone here!

Originally Posted by Andi yeah I´m sure you can relax a bit when the final test results come back. there´d be nothing worse than knowing something is wrong but not knowing what exactly it is. Yes....a bit for now. So far, I'm in about 90% belief of her condition. I mean it makes sense...but I'll feel better after the other test are done to rule out everything else. Thank you, Andi!

Originally Posted by Aquilah Wow! That's mighty interesting Kelly! I'm glad she's okay! I couldn't imagine having to go through something like that! I've had a friend who had a sleep deprived EEG, and I think the worst part about it was having to stay up! I'm glad you're closer to finding out what's wrong! While I "hope" that's what's been causing her to faint, I also hope she bypasses it quickly! Please be sure to keep us informed!
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I know...I found it funny, but not funny, if you know what I mean. Yes the sleep deprived EEG will be fun...I told her we'd grab some movies and I sure hope I make it through the night. Good thing Mom's driving that day (my mom). The Dr. says she'll outgrow it...but until then, he said it's likely to happen again (he's pretty sure it will happen again before she outgrows it). Hard to imagine where or when...hopefully never school or hopefully she knows enough to sit down quick and such. Yep I've been coaching her on that one and how important it is to sit QUICK!
 
I still keep you in my prayers Kelly, and I hope this passes quickly! Please do remember to keep us informed as you find the time! I hope her EEG goes well, and I'm glad you're teaching her to do what she'll need to do to ensure she's okay with the next oncoming "attack."
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Kelly,

Hugs and you didn't bomb anything.

Family and loved ones come first.

We knew you were with us in spirit anyway!!!

So no worries, GF!

 
wow kelly what rollercoaster ride you have been on. as mom of a special needs child the only little tid bit i can offer is to get copies of every single visit and test done, you will need them later believe me and you dont want to have to be running around trying to find them 2 years down the road and trying to remember what she had and where. it is just useful to start her a folder, you wont understand all the stuff the doctors and radiolgist wrote but thats ok you still need this stuff.

can they give her a eeg to take home , like i know my hubby had a little portable machine thing that kept track of his heart when he was home , it was wired to his heart with patch and the machine itself was able to be put in his front pocket. i dont know if it is possible with a brain type scan but if it is it would help to see if she is having seziures in her sleep. if so it may be that some medication be prscribed to keep her having them while sleeping and you know chocking or something. i would get her one of those pad like things that they make for babies that keep them on their side while they sleep, just till she out grows this. sorry i am not trying to stress you out i am just a worry wart about this kinda thing i lost a baby to sids so i just freak over everything.

i have to go look this up now i have never heard of it.

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Dang! You have had a time...hopefully she won't have any more ...but, certaintly glad you found out why...

 
We had the 3 tests yesterday, the sleep deprived EEG, the MRI, and the EKG. Man that sleep deprived EEG....was torcher on me...had to stay away with her to keep her awake.

I will get the results on Monday/Tuesday and update everyone. Thanks for everyones words, concerns, advice....I love ya all!!!!

 
all the best for good results..........I'm glad to see how in depth they are looking!!

 
Originally Posted by dentaldee all the best for good results..........I'm glad to see how in depth they are looking!! Me too!!!!We'll be thinking of you on Monday/Tuesday!!!
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Best of luck Kelly! Please be sure to let us know how her test results turn out!
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Definitely good luck (and get some sleep!! heh).

Will be looking for the update when you get the results!!

 

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