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Apr 13, 2012 · Autonomic Dysfunction or POTS in teens. Help! in About Kids & Teens

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!!!

Feb 11, 2012 · Has anyone had experience with pediatric chronic fatigue syndrome? in About Kids & Teens

Sorry I did not explain things very well. The tilt table is diagnostic only. It shows the change in heart rate and blood pressure from laying down to standing up. My daughters difference was HUGE, yet we never noticed anything other than fatigue. The tilt table is not a treatment. We only did the one test. Treatment has not been super sucessful for us because it’s hard for a kid to be compliant 7 days a week (high fluid intake, high salt intake, daily treadmill for 30 mins of fast walking). She is also on a beta blocker medication to slow down her heart rate. Again, we had no idea how rapid her heart rate was and it was not detected until we went to Mayo. Maybe she can call Mayo clinic and see if she can be seen for a tilt table test and other workup. We have been super happy there. We start a 3-week outpatient program next week.

Feb 11, 2012 · Has anyone had experience with pediatric chronic fatigue syndrome? in About Kids & Teens

Oh look, I found the other response I was typing. Autonomic Dysfunction (AD) causes extreme fatigue. The root of the problem is that the blood pools in the legs causing the heart to work very hard all day. A tilt table test is when they strap you to a table lying down and then put the table up so that you are virtually standing. They monitor blood pressure and heart rate. A normal person’s changes by about 10 points. If you have AD it changes drastically.

Feb 11, 2012 · Has anyone had experience with pediatric chronic fatigue syndrome? in About Kids & Teens

Shoot, I wrong a long reply and then it was gone. I’ll try again. A tilt table test checks changes in heart rate and blood pressure from laying down to standing. I think Mayo clinic might be one of the few places that has the test and knows about this diagnosis. My daughter had the headaches too. Does she live anywhere near Mayo? Is she super tired even after a good nights sleep? This condition tends to impact high achieving girls around the onset of puberty. My daughter’s hit the summer after 5th grade. She was a straight A student who could no longer concentrate. It’s a very misdiagnosed illness! Often think kids just have depression.

Feb 11, 2012 · Pediatric Pain Rehabilitation Program in About Kids & Teens

Wow, thank you!!! Any advice of what to bring with us or what to prepare for in the program? Do you have other children? Did they participate? We have an 8 year old son. Wondering how to help him understand his sister’s health condition.

Feb 11, 2012 · Autonomic Dysfunction or POTS in teens. Help! in About Kids & Teens

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!

Feb 11, 2012 · Pediatric Pain Rehabilitation Program in About Kids & Teens

My 13 year old daughter who has Autonomic Dysfunction is starting the program this week at the Mayo. Do you know about the 3-week Mayo program? Insurance was tough to obtain, but we got it and are so ready to start the road to recovery we hope.

Feb 11, 2012 · Auto Immune Disease(hypothyroid) & Postural Tachycardia Syndrome in Autoimmune Diseases

Hi Donna, my name is Susan and my 13 year old daughter has Autonomic Dysfunction very similar to POTS. It is a nightmare of a disease as you well know. We are going to Mayo this week for a 3 week intensive program geared to help teens with her condition. She is on a beta blocker to protect her heart, but other than that it is heavy salt intake, tons of fluids and regular exercise (treadmill 6 days a week for 30 mins). Of course, what 13 year old who feels awful can live up to that routine? Thus the cycle of missing school and lots of tears continue at our household. Wish I could be more helpful, but I do offer my emotional support!