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Autonomic Dysfunction In Families


havefaitherin
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I am feeling pretty bummed/confused about this entire thing. My little girl has been diagnosed with Neurocardiogenic Syncope. The test was done a little over a week ago. She had been getting dizzy and falling over after sitting or lying down for long periods of time. So, my cardiologist here wanted to do a tilt table, just to make sure it was nothing. Well, it wasn't nothing. I even stayed in the room as I thought nothing would happen-she would be fine. Then, six minutes into the test she started shaking with a blank stare. I watched her blood pressure and heart rate plummet quickly. Next thing you know she's totally out. I thought since I pass out I could handle it I guess. It was not easy at all. I realize God has a plan for everything in our lives. I just have a hard time dealing with the fact that I will have to watch my little girl suffer.

The crazy thing is, I wasn't even diagnosed until I was 29 and now we know at her young age she has this. I know there are blessings here. The fact that we know she has this gives us the ability to use tools we know can help her. The hardest part is her love for soccer. Every day she goes to practice or a game she comes home either feeling like she will vomit or she has a migraine. Yet, despite this, she has a passion to want to continue to play. So, we are letting her. She also dances-tap and jazz. The tap is very demanding and fast paced, and she usually does very well with that, we believe because it's indoors. She does however get migraines during or after dance also, at times.

I went to see my specialist in Toledo yesterday and they would like to see her. That's nice because I know that they are some of the best in the business of Autonomic Dysfunction. I always seem to feel a little better every time I walk away from there.

What to do? It's one thing to deal with this yourself, but it feels like a whole new light knowing my little girl has to deal with this.

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Hang in there. I was dianosed about 2 months ago and I am 39. My son who is 17 is going to be tested soon. Yes it does hurt to see our children suffer but as you said, God does have a plan and he loves them even more than we do. The good thing is that you know what is wrong with her and can get her help. I know that I have had this since I was 15 but just finally got a diagnosis. My son is very active and sports and I think he will be able to continue.

mary

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Hi,

I am new to this site, and still learning how to reply and post, so I'm sorry for the last reply being a repeat of the original message. I'll get it, just give me a chance.

Anyway, I wanted to reply to your post, because i know what you are going through. I was just diagnosed with Baroreflex failure / hyperadrenergic form. However, mine started after a spinal block that was done wrong. Prior to this, I never had autonomic problems. However, I have had many other problems since i've been 18 years old. And no one in my family (meaning my sister and brothers and mother and father) have never experienced any type of autonomic problems. But then there are my own kids, which I have three kids. Out of the three, my two oldest have been suffering for years with autonomic problems. But they were never diagnosed with this. The doctor has given a ton of different reasons over the past several years for there passing out spells and many of there other problems.

When I began to have problems, I too was given crazy diagnosises that didn't add up. So, I started looking into things myself, and began searching out a docor to help me. During this time I began to learn about dysautonomia and realized that my two older kids and my husband all have some form of this. You see, my husband has been having passing out spells and heat and cold intolerances as well as migraines and many other symptoms for over 25 years. but he was always atributing it to meds he had taken or the weather, because he works outside as a construction worker. And the doctors have always gone along with him, as that being the reason for his problems. Then my oldest, shortly after going through puberty started with migraines, fatigue, joint aches, and passing out spells. I took him back and forth to doctors and we were told that he was a young kid who played hard and this was not abnormal. He was also diagnosed with asthma, as the reason for his shortness of breath and rapid heart rate which would cause him to pass out. So, we accepted this and learned to work around it. Then my daughter started with the same symptoms only worse, shortly after starting her menstrual cycle. We were told again it was probably due to the heavy bleeding, and everytime she tried to join a sport she would pass out. Even during gym class after running she would collapse. So, the doctor diagnosed her with exercise induced asthma. Once again we learned to live with this and go on.

However, over the years both of my older children have had problems with black outs, even while driving. My daughter has gotten so bad that when it is that time of the month for her she can pass out just getting out of bed. It is becoming worse for both of them the older they are getting and it is very hard to watch as a parent. But now knowing my diagnosis, it is time to have both of them tested. However, my doctor still questions my sons problems but feels that my daughter definetely has it. but they will both be tested within the month.

As for my husband he was diagnosed two weeks ago with POTS. So, I now wonder about a family link. The reason for my husbands POTS is probably due to a drug called DES that his mom took while pregnant with him. It was taken off of the market because of the number of severe birth defects and cancers it acaused the children born to these parents. We also know that it altered my husbands DNA and he can pass on the effects of this drug to his children. So, i'm looking into this link.

Anyway, I know how hard it is to watch your babies go through this. The one positive that you have is that you know from the start what you are dealing with and you can get your daughter the help she needs now, so hopefully she will be able to enjoy the things she loves. I can also tell you that it is the scariest thing to watch your own child pass out or to get a phone call from the school, hospital, or police dept. that your child passed out and you need to come right away. My heart goes out to you. I hope your child will get on the right drugs and will not experience the bad side effects that go along with this disease. And always have hope that the medical field is moving fast and our children will probably see a cure in there lifetime. one last thing, because you have it too, you will be able to understand and be able to give your daughter the support that most family members will not be able to. This is a plus for the both of you. You can let this be the one thing that brings you and your daughter closer together.

Well I have written enough so I will stop now. just know that you are not alone in dealing with the family link. Good Luck to you and your daughter.

Joline

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I am sure my son is starting to show symptoms. Nothing worse than seeing your kids suffer....He's been sick since age 11 and is going to be 26 in a week and a half.

The only recommendation I can give is therapy, for you and the child, to learn coping mechanisms, and positive reinforcemnet. Our first inclination is to protect them from everything, but that is not the best thing to do, trust me, I have learned this the hard way.

Good luck and hopefully she will be one of those kids that gets better with age. My sister had NCS at the same age as your daughter, but hasn't had problems for 30 years, she is in her 50"s. Guess it does happen....morgan

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hello (and welcome to the site...i've been away for a bit so didn't have a chance to welcome you :P ).

i'll be honest that i debated whether or not my answering would be encouraging to you (and your daughter) or not as i'm one of the people who didn't grow out of things and whom i doubt anyone would be hoping to follow the path of medically/ health-wise in terms of my past few years. but bear with me as i think some of my experience during my younger years may still be good for you to hear in regard to your daughter, her love for soccer, etc.

though my diagnosis has since changed, i was diagnosed with NCS at 17 after having intermittant problems from the time i was 11. though my health issues were definitely a consideration - to varying degrees at different times - with aggressive & creative treatment as well (as some stubborness on my part) i was all in all still able to be very active for many years. as others have said, there are a large number of teens who outgrow autonomic issues, or at least improve to the point where they are a very minor consideration. of course that would be wonderful if that is the case for your daughter. but whether it is or isn't, with some creativity, proper management, & bumps in the road (i.e. a cold would knock me out in a way that i couldn't just "push through") your daughter very well may be able to stay quite active & engaged in the things that mean the most to her. obviously i can't guarantee this, nor can any doctor, but it definitely isn't out of the question. just as examples, i was able to swim, run, row, & do triathlons competitively for years. i was active in student government, musicals, instrumental & vocal music, mission trips involving construction/ hard manual labor, etc, etc. were there days/ hours that i couldn't do these things? yes. generally when i needed meds adjusted or was fighting an infection of some sort. but all in all, if i got enough rest, had the right meds in my system (generally to raise my BP), & kept my salt & fluid intake VERY high, i was pretty okay for a good long while.

i hope that your daughter is able to find the right combo of things - medicine & otherwise - to help her be & do as much as possible. as an aside that you may find interesting, it was explained to me that being very active - for those who can - is actually one way of keeping one's BP up/ preventing syncope. for instance at times i could run for miles but had to be careful when i stopped! something that might be helpful for your daughter such that she may do better walking/ moving around a bit (even if just moving legs) post running during soccer (rather than coming to a dead stop); obviously not a definite but just an idea to throw your way. it's great to hear that she'll be seeing the doc who i've found to be the best with tweaking meds...while i've seen many others over the years he's been my doc since diagnosis. he doesn't have all of the answers &/or magic fixes but he'll do his best to get things to be the best they can be given the situation at hand.

and last but not least, your daughter is certainly lucky to have a mom that "gets it". obviously it's not "lucky" that you both have to deal with dysautonomia, but your understanding will mean more to her as she traverses the landscape of ups & downs than you will even realize.

so...i do NOT mean to minimize how tough this must be on you (to see your daughter struggle) or on her. not at all. it is hard & to some degree will continue to be. but i did want to let you know that it may be possible for her to stay pretty active.

all the best,

B) melissa

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I don't have any words of wisdom, as I'm the first in my family to have any sort of autonomic disorder and, hopefully, the last. I pray that my boys inherit their daddy's health! I just wanted to say that I'm sorry that you're having to go through this. I hope your daughter does, in fact, grow out of it as best she can. :P *hugs*

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I can say that I truly understand how you feel. I have POTS/NMH and was dx in September of 2006, my mother was dx in 11/2006 and my daughter in 3/2007. I never new any thing like this ever existed. My mother has been ill most of her life, but it was attributed to her heart problems. When I first started having symptoms, I just thought I had a bug or something, but as the years passed my thoughts changed. When I was dx it hit me like a ton of bricks, then I started peacing things together. My fainting issues when I was a teenager, my constant need for sleep, etc. I soon realized that this is something I have had my whole life. But when my daughter was dx it took on a whole new perspective. I was mad, hurt, angry, depressed. I gave this to my daughter, unknowingly, but I still gave it to her. I had terrible feelings of guilt. I am learning to work through these feelings, but still have trouble dealing with it. My PCP said it best to me. She said "Nolie, are you going to tell me that you would have forgone having children, one of gods greatest gifts, if you would have know that you had this disorder". Hello, smack in the face. Having a child is a gift and we can not predict what they will be born with or without. The thing we can do now that we know is educate us and them, help them through it and teach them to be advocates for themselves. My daughter is 16 and she get very angry sometimes at her disorder, which is CFS/POTS/NMH along with a lot of other health issues. She is learning to cope and I have the ability to educate her and teach her how to manage her symptoms. She is a very active girl and plays both high school softball and tournament fast-pitch softball. She has learned to push her fluid/salt intake higher to be able to maintain her ability to play sports. We have also worked with her pediatric cardio on different medications. Some didn't work and we stopped them, other worked and she's still on them. It's finding the right balance for her. She is not angry at me (as we have talked about this a lot), she is angry at the disorder and how it effects her. She is determined that this disorder will not beat her and that she will stay as active and busy as possible until she either out grows it or it gets the better of her. She still plays sports, works part-time, goes to school full-time, hangs out with friends, goes to amusement parks, etc, and still leads a normal life. Her friends know, in case she would pass out, so they can help treat her. She's even getting her Drivers License in 2 weeks. To her she is sick, to the rest of the world she is normal. She know how sick I am and how much this disorder has limited my life and she still plans on living hers as much as possible. Kids are great. They don't let much get in their way. Including sickness. My advise would to be

1)Educate her....kids are never to young to start learning

2)Don't be afraid for her, let her be her. She will learn with time and guidance from you how to deal and manage.

3)Teach her that she can still do whatever she wants to do. Let her learn her own limits.

4) Talk to her about how you feel. Keep the doors open to conversation.

I've learned with my daughter that if I make it a big deal then it is a big deal, If I down play it then she feel safer and more calm about it and deals with it better.

As for how you feel...it's ok to feel scared, angry, mad, guilty, bummed, confused, etc. The important thing is how you handle it with her. Keep upbeat about it, but keep it honest. Kids are smarter than we give them credit for. Hang in there and keep talking to her about it. Kids take their cue from us and how we react is how they react.

If you ever want to talk to me about my daughter or anything else please feel free to ask. You can PM me or send a message to thejohnsongang@adelphia.net. I would be more than happy to help in anyway I can. I wish you the best in learning to cope and will be keeping you in my thoughts and prayers. Also sending a big "HUG" your way. Hang in there.

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Thanks everyone! Your responses are great and encouraging. I know things will work out, no matter what the outcome will be. We are a strong family with a ton of faith, so that will sustain us. I'm not saying it will always be easy, but I know we will be sustained.

I am going to take all of the advice and decide what to use that will help her. She is a pretty upbeat kid, so that will make it much easier.

Melissa, I read the article about you in the newsletter and find your journey amazing and see that you have great strength. Thanks for letting me see both sides of this disease, good and bad.

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