HI Everyone:

I am the mother of a 10 year old little girl who was diagnosed with Neurocardiogenic Syncopy about 2 years ago. I would just like to get to know other people who have been diagnosed with this problem, or who have family who do. There do not seem to be a lot of support groups for this. She seems to be doing "OK" on the Florinef that she is on when she decides she is going to take it of her own free will. However, she is non compliant with the drinking of the gatorade and the salt issue. It's just that I am so frustrated with her sometimes when she won't comply. She has had some REALLY BAD spells and seizures and I just can't make her see that if she doesn't take her meds and drink, I am afraid that the next time she has a seizure or fainting spell she won't wake up !!!

Thanks for listening:
Marie Russell
Lexi's Mom

I read what Tinkerbell wrote the wrong way...I assumed she let her daughter have control, but this is not the case....so I am deleting this post as it sounded too inflamitory.
My two adopted girls had lots of metabolic issues as well.....so I'm sorry I wrote anything.
Blessings, cheryl

Dear Cheryl:

By no means did I mean to implicate that I don't let Lexi take her meds if she doesn't want to!! I force her to everyday!! That is why I said "of her own free will" meaning that she sometimes doesn't give me a fight and yet there are other days we have a battle of the wits to make sure she takes her pills. I would Definatley NOT BE ABLE TO LIVE WITH MYSELF if she had a seizure due to Not taking her medication. I would never EVER PUT MY CHILDS LIFE IN DANGER EVER...Let me reiterate that I FORCE HER EVERYDAY TO TAKE HER MEDS AND TO DRINK AS MUCH AS POSSIBLE!! I have even gone to school and embarrassed her by sitting in her classroom to watch her drink in school and make sure that she finishes every drop!!!! But there are also days that I cannot be with her that the gatorade bottle comes back with only a few sips taken out of it. And make no mistake, her cardiologist is aware of this situation and he lays in on her too!! I posted in order to get a little support and now that you have accomplished making me feel like an inadiquate and abusive parent, I will bid you a good evening

Marie,
My daughter was recently diagnosed with Dysautonomia, after searching for answers for years (don't know yet what kind, will be going to Mayo next month for help). Hannah is now 18 and we are still struggling to find what helps and what doesn't. This is a TOUGH diagnosis!
Have you checked out www.dynakids.org ? They have a youth forum to help connect the kids dealing with this as well as a parent forum. I would start there.
Do you have a dysautonomia specialist following your daughter and her meds? I ask because florinef was not the right med for my daughter and we are still trying to figure out the right one. It is very individualized. You really need a doctor who understands this disorder and there are only a few in the US.
You are a GREAT parent for reaching out and seeking help! As a parent we can only force our children to do so much. It is wise to allow your child to have some control and learn what does and doesn't help her.
Stay strong, ok.
Lisa

Marie,

I know it better as Vasovagal Syncope - brought on by my ticker probs. and also as a response to extreme pain. My cardiologist dx'd it. I understand how your daughter feels about the G. product; I can't stomach it. Possibly, her cardiologist might have other suggestions - suitable to replace the G.

This describes how mine feels, and has felt:
http://www.healthboards.com/boards/s...3&postcount=23

When I was describing how it feels for me (at OBT Spinal Disorders forum), Tbackpain1 was very helpful; she actually informed me of the clincial name when others thought I was possibly describing migraines, which I don't have. She might also be able to help you .

This is a link to her profile - in case you might want to PM her:

http://forums.braintalk2.org/member.php?u=269

Thanks LisaJean and Bobbi....

Lexi goes to see her cardiologist on the 7th of October and he did mention Dysautonomus and we are going to be looking into it. The doc did mention that there are only a few REALLY GOOD DOCS for this and that if all else fail he will be giving me a referral to the Mayo clinic. So I am keeping my fingers crossed. Lexi failed the tilt table study miserably. She was on the table for less than a minute without the IV running and her heart stopped and she had almost no breathing. Talk about horrifying!! The cardiologist said that she had the worst tilt table study in A.I. DuPont for Children's History We have been through soo many tests and to soo many docs. We had docs who said that she was faking it and docs who said that I WAS DOING IT, and then other docs who said that it was in both of our heads!! My mom(Cardiac Technician) and I have walked out on so many doctors because they can be so ridiculous at times.

I even had one doc who wanted me Not to call 911 when my daughter was having a seizure, but to video tape it and send it to him as proof!!! WHAT AN IDIOT. Some of them just don't understand that as a mother, your supposed to be able to kiss it and make it better all the time, but what happens when you can't?? The holidays are rough for her when all the goodies come out and family members forget and bake brownies to give us or chocolate chip cookies. Halloween has been the worst in the past. Lexi use to think "What's the point in trick or treating, if you can't eat the candy!!" but I can say that family members are remembering and offering her lollipops or starbursts and things like that so she can Trick or Treat with little sis

As for the Gatorade, I am now experimenting with new and inventive ways to get her to drink it. Little by little it's starting to work. She seems to like the "RAIN" version a little better. we were told that she needs to drink at least 1 gallon a day and in the summer 2 gallons. That is an astronomical amount and I can sympathize with her sometimes. It's the teachers in school too I know that they have a lot of children to look after in the class, but i keep telling them that it isn't going to disrrupt your class if you walk over to her and whisper in her ear to drink!!

Anyway, thanks for the website and the G. types. I will definately be looking into them.

Thank You Both So Much and Many Blesings
Marie

When I read your post....I read that you let her practice her own free will with this....I am really sorry I made you so very, very angry. Can you blame me for trying to make some sense out of this if this were the case?
I've gone back and reread your post...and I guess I'm just not reading it right because I came to the same conclusion as did my husband and one other person.
With my daughter....I had to force her into following doctors orders.... she wanted to do things on her own and told me this was her "free will", her body.....after I read your post I thought this is what you were practicing....can you see why I thought this in what you wrote "free will" as this rang some old bells for me in that statement.
Please forgive me for reading your post wrongly.
BT has always been full of helpful and supportive and caring people in the years I've posted.
I have been through Hell and back with my health, my husbands and childrens....and I am not one to hate.
Anyone suffering from illnesses and their caretakers need all the support they can get.
I do hope you find a connection with others who are helpful.
Please forgive my reading your post and coming to such a horrible conclusion.
Your life must be very hard right now....worried sick.
Your daughter will be fine.....she has a good advocate! There's nothing better than a tenacious mother!
Mayo Clinic sounds like a good idea. They are wonderful, caring and very thorough.
Once again....I ask forgiveness in making you feel so awful.
You will find a lot of support here on BT.....hopefully our old site will be back soon.
Blessings to you and your daughter, Cheryl

Marie,

Have you ever looked into Celiac Disease? Scroll down to gluten Sensitive/Celiac Disease and do some reading. Also read Jcc gluten file:

http://jccglutenfree.googlepages.com/

I had many autonomic symptoms for years. I had a positive tilt table test. I would have out of control blood pressure that would go up to 160/120 and down to 80/50.

Seizures can be a symptom of Celiac Disease. There are a few people on the forum that have had major relief from their seizures by going gluten free.

Have they done any vitamin testing? Have they done a complete ferritin and iron test? My daughter was having similar blacking out problems around 11 or 12. We ignored this as to just hormones. She has also been dx with Celiac Disease.

Don't expect your cardio or even primary doctor to be very familiar with this disease as I went to one of the best clinics in the world and they sent me home with no diagnosis. It was with the help of braintalk that made me go in and demand this tests.

What you might think about is that many conditions have an underlying reason for the symptoms. Doctors are taught to find a condition and treat with drugs or repair with surgery. I am not against either but I do think that doctors need to try harder to find reasons for some of our health problems.

Hope things get better soon.

Marie,
Are you sure she needs to drink that much gatoraide? That is a lot of sugar and calories. I believe that plain water is just fine. Also Propel, Vitamin water etc... if she wants something different. Just make sure she eats lots of salty foods.
I've been told the dysautonomia specialist at Mayo is wonderful. His name is Dr. Fischer. I've spoken with his nurse a few times and she is very nice. It takes months to get it to see him so get a referral right away if that is who you want to see. I don't know where you live but the #1 dysautonomia specialist is in Toledo Ohio. His name is Dr. Blair Grubb. Also supposed to be awesome.
llonghair, my daughter has celiac disease. I think that is where I first made the connection. She maintains a strict gluten free diet (her sister and I also have CD) but it hasn't helped her dysautonomic symptoms any. Darn!
But I agree with testing for celiac disease. Good advice.
Good luck Marie and keep us posted. Please check out the DYNA site. It has been a godsend for me.
Lisa

Dear Llonghair and Lisajean:

Thanks for the posts !!! To answer your question about the Celiac Disease, Lexi has been tested four times with a negative result. The doc said that it was highly unlikely because she didn't have any of the other symptoms associated with a gluten allergy or Celiac Disease. But we tried the Gluten Free diet anyway for 6 months. Unfortunately Lexi continued to have fainting spells and seizures. Her Cardio (who I think is the greatest) said that the last time she had a seizure,,,, 3 weeks ago,,, she ws throwing PVCs in her EKG and that he was a little concerned about that. She has been on a holter monitor since. She has to press the button when she gets that "Icky" feeling that she gets when she is going to faint. He said that there was a possiblility that the docs in the E.R. could have missed something when did the Sonogram???? you know where they take a look at the heart working with the gel. Like when your pregnant. Oh, My I am so terrible with medical terms LOL. In any case they are now going to be looking at WPW.(Wolf-Parkinson White)

So we will see what the test shows on the 17th. As far as the Gatorade...Cardio says yes with that much because her blood pressure is sooo low to begin with. And that the added extra electrolytes and sodium help. He also said that any other power sports drink like propel, powerade and things like that would work just as well so we are trying them all. The doc said that NCS on a percentage basis in the case studies,effected the very tall and thin girls which Lexi is.. She is in 5th grade and 5 foot 3 already and slender ( yes she is taller than her mommy lol ).

I know that when we go out to eat she becomes very self conscious of people watching her put extra salt on her food, but she is getting better at that too. I had an experience while we were in DisneyWorld on vacation this summer. We were in the Magic Kingdom eating at a McDonalds little place and a woman at the next table was just staring at her and listening to me telling Lexi to add salt to her French Fries. After we were done, the woman had enough gawl to come up to me and say that I was a bad parent for allowing my child to add tons of salt to an already salty food and that Didn't I know that obescity and Heart Disease is an epademic I ask Lexi to go with her grandmother and wash up, I turned to the woman and said "It's Because of a Heart Condition that she Needs the Salt" I would beg you to keep your comments to yourself because you don't know me , my daughter, or our situation!!

I think that it is situations like that that keep her from feeling in her 10 year old mind,,,"Normal" she has always been very self conscious and I think that is part of her partial non compliance with the drinking and the salt. I hope that someday, she will understand that I am a bear sometimes for her own good!!

Thanks and Many Blessings
Marie
P...S... thanks for the Dysautomomus website. I visited there yesterday and I added it to my favs