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Joined: Feb 11, 2012

Autonomic Dysfunction or POTS in teens. Help!

Posted by @sdavisali, Feb 11, 2012

Hi I’m Susan, my 13 year old daughter went from a normal healthy kid, to life as a sad, exhausted girl around the age of 11. She was too exhausted to move. We had no idea what was wrong with her and her local doctor could not find a cause. Assumed to be psychological. We pushed on for a diagnosis and finally got a diagnosis of Autonomic Dysfunction at the Mayo clinic last summer. If you are a parent with a child like mine, I’d love to connect. It’s a very stressful condition both physically and pyschologically as you know. We are starting the Mayo 3-week pediatric pain rehab program this week. Will keep everyone posted on progress!



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Posted by @charlotteo, Apr 12, 2012

I would be interested in talking with you. My granddaughter age 14 has gone from a bright athletic girl to sleeping 18 hrs out of 24, nausea after eating, hungry all the time, missing school and exhausted. Have you received any answers yet?


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Posted by @sdavisali, Apr 13, 2012

We do have some answers now – not a cure, but help and answers. My daughter attended the PRC program at Mayo. It”s 17 days of treatment. Amazing program!!! Has your granddaughter been tested for POTS? Google ‘Dr. Fischer and POTS” to see a video on YouTube put out by Dr. Fischer at Mayo. He’s the expert. Contact me anytime!!!

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Posted by @christiansmom, Apr 25, 2012

Hello I am also named Kim. My son has POTS and we are still struggling trying to manage the symptoms or develop somewhat of a new routine. he is in bed the majority of the time. I am seeing the Dr. today to get a referal to the Pain Program. I do keep hearing how much it helps! Beyond increased salt, fluid and excercise… any other ideas?


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Posted by @jocienance, Jun 30, 2012

I’m 15 years old and been dealing with very similar things I believe I have POTS and have been goin to Riley Children’s Hospital but I just need some answers I am seriously considering traveling to Minnesota to Mayo Clinic


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Posted by @kchartwick, Apr 22, 2012

Hello Susan, I’m Kim and my daughter was diagnosed with both types of thyroidism a year ago in March. We went to the Mayo Clinic in Minnesota at the end of Sept last year. We were signed up to attend the Pain rehab clinic until our isurance denied it 2 times. My daughter also has an intense chronic pain on the left side of her head. Other than the thyroid diagnois nothing has been done to help with the pain. We see numerous doctors and have been at this for over two years now. I’m new on this web site and am looking for other parents who are dealing with many doctors and not many answers. Hope your daughter is doing better and would love to chat with you on here sometime.


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Posted by @spitz16, Jun 27, 2012

I am an 18 year old female and I have CFS and IBS but the treatment I have undergone so far has only scratched the surface. I think I have POTS but not many doctors have taken me seriously. I live near cincinnati so I don’t have immediate access to specialists at the Cleveland or Mayo Clinic. Any advice?


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Posted by @thegiffins, Oct 4, 2013

i have a 15 year old daughter that has had gastro issues since she was 2 weeks old (always diagnosed as the flu) and migraines since she was 4 1/2 yo. She was then diagnosed with Hoshimoto’s Thyroiditis when she was 8. She missed school last year from february 2013-may 2013. We are now on week 5 of this school year. She is so tired of being sick!!!! She has had every lab, CT, US, MRI, ect. they can think of and every time the results are “normal”….. I found a list of symptoms for autonomic dysfunction and she matches 95% of them. We live in a small town in Montana and our medical providers are very limited.
I don’t have an actual diagnosis but i feel this may be the right track. I am just lost at what to do. It breaks my heart everyday to see her sick and stuck in bed.


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Posted by @burlfish40, Oct 4, 2013

I don’t think there is a valid “psychological” reason that would explain the symptoms you described. Maybe an escape term for someone who doesn’t really know what causing the change as well !!!

Beth in Iowa

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Posted by @kds1236, Sat, Jul 15 6:58pm

I have a 17 year old daughter that has just recently been diagnosed with Autonomic Dysfunction. It has been a long road getting to this diagnosis. We were told that everything was in her head, she was faking , or that this was psychological. Finally a diagnosis after 1 year of tests clinics and hospitals. My daughter missed half of her Junior year and has had to give up everything that ever meant anything to her. Her friends pretty much abandoned her and she if at home alone most of the time. There is no cure but we have been given some strategies to use. The biggest issue right now is dealing with her immense depression and feelings of worthlessness. This was at one time a very talented young lady full of energy, creative, musical. To see her wither to this is unbearable to her and me. I am at wits end and feel like I do not have the tools to help her. No matter what I do it does not seem to be helpful. I just need someone to talk this through I feel so alone and when feel like everyone is sick of hearing about it. I would do anything to make her feel better. Any suggestions would be so helpful

Tony Hart, Champions Specialist

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Posted by @TonyHart87, Sat, Jul 15 6:58pm

Hang in there Beth! Now that you have a diagnosis, I hope things start to go better for yourself and your daughter.

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