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My 13-year-old daughter is having problems with heat intolerance. She turns pale and complains of not being able to breathe. Her behavior reminds me a lot of how I was at her age. I started fainting at 14. Also, her bp was 90/60 a few weeks ago when I took her to the doctor for a sinus infection. My question is, do I take her in to be evaluated for dysautonomia now, or do I just wait and see??? One of my worst fears is passing this on to her. My mind tells me it wouldn't be my fault, but I know I would still feel guilty. I just hate the thought of her having to deal with this every day of her life.

I thank you in advance for any advice.

Samantha

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I'd rather know early than later, and you can start treating it and know what to expect.

I feel better just knowing what I have, and finally found medicines that allow me to somewhat function.

They always say there's a chance of it getting better so you have to believe in that...and she does know what you have, right? And she probably realizes she's having some of those similar symptoms? I know at 13 I was well aware of what was going on and would rather my family be up front with me.

I can understand you not wanting to 'pass this down' but you didn't know that would happen, so please don't blame yourself. Genetic Counseling has only been popular in the last few years.

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you can check on the main page of dinet.. they have a listing of dr's.. some who i believe treat kids. I wish you and your daughter luck...Oh you can check DYNA kids too.. Im not sure if they have a listing of dr's.. but it a dysautonomia site for youngster ....good luck

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My daughter has this illness and was diagnosed when she was 14. Dr. Coglan saw her and the ttt made her start to pass out at 4 minutes. I thought that knowing for sure would help explain the symptoms she was having. I don't want her to ever get housebound and then bedridden for sooo many years like her Mom . I wish I had known about resting and avoiding heat etc. We both will be seeing Dr. Grubb next week. It is of course not your fault, but we can't help thinking about it. Finding a diagnoses early is a blessing. Hope you are having one of your better days. Mary

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Yes, heat intolerance is a symptom. I've had symptoms since I was younger then she is. I was 51 before someone finally did a TTT and confirmed. That positive test has now opened all kinds of doors for treatment that I couldn't get before. Maybe if I had been diagnosed and treated when I was younger I might have grown out of it.

They do believe many diagnosed when they are younger do grow out of it, with treatment. Maybe she will be one of them. TTT sooner rather then later.

Guilt about passing it on to her, is wasted energy! If it's genetic you got it from your parents, do you blame them? Nothing we can do about what is passed down through are DNA, so refocus that energy and your own experience to nipping it in the bud. If I had a daughter that is what I would do. So don't feel bad, accept, it is what it is!

Hope you both feel better soon.

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Thanks for all of the replies. My parents don't have dysautonomia, but my grandma did. My daughter knows a lot about this illness. I'm going to go ahead and take her to a doctor. It took me way too long to get a diagnosis. We'll just hope for the best.

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