Welcome

This site is for those searching for answers to a debilitating fatigue that strikes young people and leaves them struggling but unable to even get out of bed. Postural Orthostatic Tachycardia Syndrome (POTS) often goes undiagnosed, and parents are left searching for answers and help for their children. Many of these young people are isolated from friends and school because of their condition, and as a result are unable to complete their education.

Physicians, including pediatricians, and school administrators alike are often unaware of POTS and so don’t recognize the symptoms. There is no cure for POTS. Yet, there is good news! There are treatments that can help the young person with POTS function, complete their education, and remain part of their family and friends’ lives. More good news is that almost always the teen with POTS will “outgrow” the syndrome by early adulthood.

Often POTS begins suddenly after an illness – often viral with a high fever. My daughter caught mononucleosis at her elementary school in 5th grade in the spring of 2003, when she was not yet 11, and that was the onset of POTS for her. For the next 5 1/2 years, we searched for answers, physicians, medications, anything t0 help her. In the fall of 2008, we were referred to Dr. Daryl Lynch, Director of the Teen Clinic, at Children’s Mercy Hospital in Kansas City. At last we had found someone who immediately recognized her symptoms, was knowledgeable about POTS, and experienced in treating this syndrome. Following testing, the diagnosis was confirmed.

With effective treatment in place, she was able to cope with POTS as best as possible, and today at age 20 is beginning her junior year in college, as the symptoms of POTS gradually fade away.

Click on “About” to learn more about POTS. Posts to this site will include sharing of articles about POTS, to provide greater understanding for parents, teachers, physicians and other caregivers. We welcome posts and stories from others who have lived through or are living with POTS.

This site is dedicated to all those who are struggling with POTS today and those who are trying to support them and help find answers. And it is dedicated with gratitude to those who tried to help her along a difficult journey – a key group of friends, physicians, and educators.

A special thank you to Mayo Clinic Pediatrics for their excellent work, treatment, research and education about POTS.

6 Comments

6 thoughts on “Welcome

  1. Amy

    My daughter fell ill last year and developed POTS afterwards took us months to find somebody that actually could give us a diagnosis :( this summer she seemed to be better but school started and she has been so tired, her symptoms have come back horrible headaches and extreme fatigue. I am going to start her back on her meds and hopefully she will get better soon. Amy

    • I hope she is doing better, Amy. It is good that you have the diagnosis. I believe that so many children fall through the cracks because they do not get a diagnosis or have doctors who) can help them. I hope that the medications are helping. My daughter is very determined and independent and thought she should be able to do it herself without the meds. Finally she went to a new doctor (having “aged out” of pedicatrics). Thankfully, he is a wonderful doctor who understands POTS. He asked her if she was a diabetic would she not expect to take insulin. That hit home with her and she is back on her medication and it helps.

  2. rhonda gravedoni

    It is so wonderful to have found this site. Our daughter is now 16 and has been coping with POTS for 4 years now. When the pediatric Neurologist said to buckle up for a rollercoaster ride, she couldnt have described better.Nice to see there is hope!

  3. I am an adult sufferer of the disease diagnosed at the Marshville Clinic. I went years in small town E.R.’s basically being told I was “crazy” in a polite way. I finally could hardly get off the couch when my mother, an RN, forced me to Marshfield Clinic. A tilt test immediately confirmed the diagnosis. I am so grateful to the staff and Doctors there. It has been about 12 years now and I am doing much better. I now know what I am dealing with and how to deal with it.
    I am sympathetic to your children. It is an awful and debilitating thing to deal with. Best of luck to you all.

    • Vicki

      I was in the same situation a year and a 1/2 ago. The ER was so frustrating. I was diagnosed @ UPMC in Pittsburgh with a tilt, too. But they had trouble treating me. Put me on florinef & my BP would soar! Cleveland Clinic helped me by putting me on a cardio rehab. program. That really helped along with Propananol. Been able to go back to teaching second grade with very few flare ups. I’m 49 & I notice I get symptoms the week before my period:( I’m sick of that! I think the best advice is to not get too stressed and try to stay active, and of course a high protein diet helps me. Don’t forget to drink a lot of water, too.

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