Has anyone had experience with pediatric chronic fatigue syndrome?

Posted by Nana Carolyn @nanacarolyn, Jan 22, 2012

We are looking for answers to our granddaughters’ diagnosis. She is 11 years old.

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Our daughter began having intense chronic fatigue when she was about 11. In June of 2011 she was finally diagnosed with Autonomic Dysfunction at the Mayo. Had your granddaughter had a tilt table test? That is what finally led to our daughter’s diagnosis.

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@sdavisali

Our daughter began having intense chronic fatigue when she was about 11. In June of 2011 she was finally diagnosed with Autonomic Dysfunction at the Mayo. Had your granddaughter had a tilt table test? That is what finally led to our daughter’s diagnosis.

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She has not had this test. I don’t know what it is. Our daughter is pursuing other testing: an MRI, which is negative for any abnormalities, and allergy tests. She has been giving her daughter a Benadryl at night and allergy medication in the mornings and she has not had one of the terrible headaches she was having. I appreciate anything you can tell me. What is Autonomic Dysfunction? I hope your daughter is finding relief. Thank you for your interest.

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@sdavisali

Our daughter began having intense chronic fatigue when she was about 11. In June of 2011 she was finally diagnosed with Autonomic Dysfunction at the Mayo. Had your granddaughter had a tilt table test? That is what finally led to our daughter’s diagnosis.

Jump to this post

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.

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@sdavisali

Our daughter began having intense chronic fatigue when she was about 11. In June of 2011 she was finally diagnosed with Autonomic Dysfunction at the Mayo. Had your granddaughter had a tilt table test? That is what finally led to our daughter’s diagnosis.

Jump to this post

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.

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@sdavisali

Our daughter began having intense chronic fatigue when she was about 11. In June of 2011 she was finally diagnosed with Autonomic Dysfunction at the Mayo. Had your granddaughter had a tilt table test? That is what finally led to our daughter’s diagnosis.

Jump to this post

You sound like me on the computer, I have hit some key that makes everything disappear, so frustrating when you have typed a long response! I am sorry for your daughter’s illness. Does the table tilt help her for awhile or does she do this daily? What is the treatment? The symptoms are so much like Carolyn’s. They live near Austin but would go to Mayos if necessary.

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@sdavisali

Our daughter began having intense chronic fatigue when she was about 11. In June of 2011 she was finally diagnosed with Autonomic Dysfunction at the Mayo. Had your granddaughter had a tilt table test? That is what finally led to our daughter’s diagnosis.

Jump to this post

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.

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@sdavisali

Our daughter began having intense chronic fatigue when she was about 11. In June of 2011 she was finally diagnosed with Autonomic Dysfunction at the Mayo. Had your granddaughter had a tilt table test? That is what finally led to our daughter’s diagnosis.

Jump to this post

She has had some heart tests and they were good. I appreciate your info. It helps to hear from others whose children are hurting. We are praying their is a simpler answer that can be treated. Thanks, Nana Carolyn

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I am also looking for a diagnosis, i am 15. please tell her i am praying for her and ive dealt with chronic stomach issues, eye pain (straign) chronic pain/migraine like, im on a feeding tube all doctors doubt me so i sympathize.

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