I'm going to send out the following email to everyone I know, and I hope they forward it to everyone they know. My new mission in life is to educate people about POTS. Especially doctors. If anyone has any suggestions, I'd love to hear them.

Thanks.
-Lenna

Here's the email:

I never forward chain emails, let alone start one, but if this email can help even one kid, I’ll feel like I did something worthwhile. I hope you’ll read this and pass it on.

My reason for writing this email is to educate people about a medical condition called Postural Orthostatic Tachycardia Syndrome - POTS. It’s a form of “dysautonomia” – a disorder of the autonomic nervous system. Many doctors, including my son’s wonderful pediatrician, have never even heard of POTS. Yet the Mayo Clinic says that one in every 100 teenagers develops POTS, sometimes after a viral illness. Some kids recover on their own before their symptoms ever get diagnosed. Some kids suffer for a long, long time without a diagnosis. (POTS isn’t limited to teens – adults can get it too!)

My teenage son has POTS. His symptoms came on suddenly. He is always dizzy, nauseous, has headaches and is so fatigued that he often can’t go to school. When he walks, he sometimes looks like he’s dragging a load of bricks behind him. He can’t concentrate. This has been going on for 3 months.

My son was examined by 9 different doctors, including pediatricians, Ear/Nose/Throat specialists and neurologists. First he was diagnosed with a virus. Then it was thought that he had an inner ear infection. Medication for the nausea and dizziness didn’t help. An MRI showed nothing unusual. All the doctors asked whether my son was stressed or anxious about school or friends. He was poked and prodded. Soon the diagnosis became Migraine Associated Vertigo. He was given a migraine medication that made his symptoms worse. The plan was to wait a couple more weeks, then do a spinal tap.

By then, two months had gone by. Things were getting worse. And then one day my son mentioned to me that his heart races whenever he stands up. We measured it over several days, and sure enough his pulse would go up 30-40 beats per minute every time he stood up. None of the 9 doctors had compared his heart rate when he was sitting on an exam table to his heart rate when he was standing, despite the fact that his major complaint was dizziness.

I googled my son’s symptoms, this time including the orthostatic tachycardia. Within minutes I knew that he had POTS. Its signature symptoms are accelerated heartbeat when standing, and dizziness.

A cardiologist specializing in disorders of the autonomic nervous system conducted some tests and confirmed that POTS was the correct diagnosis.

When a healthy person stands, gravity pulls their blood towards their feet, but their autonomic nervous system immediately tells the blood vessels to constrict and the blood is pumped upward to the heart, brain and digestive system. In a person that has POTS, the autonomic nervous system isn’t doing its job and the blood just pools in the feet when the individual stands up. The heart starts pumping furiously, trying in vain to get enough blood, and the person gets dizzy, nauseous, and extremely fatigued. Some people have many other incapacitating symptoms as well, including headaches and blurry vision.

Now my son is on medication that we hope will help him function more normally. Someday he may outgrow this condition.

When your child goes to a doctor complaining about a sore throat, they routinely do a strep test. When your child goes to a doctor complaining about dizziness, the doctor should routinely compare a resting heartbeat to a standing heartbeat. This is a no-cost, non-invasive, quick procedure that could provide invaluable information about your child’s health, and could lead to a diagnosis and treatment. Of course, this is something that a parent can easily do at home.

The Mayo Clinic has made a 3-minute video about POTS. The website is http://www.medicaledge.org/2006june-3.html. It does a great job describing the symptoms and the life of a teenager who has POTS. Unfortunately, I’m not sure it can be viewed with Macintosh computers. Another website that has written information is www.potsplace.org.
I hope you will forward this email to anyone you know who has kids, grandkids, nieces, nephews, friends and neighbors with kids, or anyone who works with kids. Please email it to your doctor and school nurse. Maybe it will help someone whose child is suffering from perplexing symptoms. Please, let’s get the word out about POTS. Let’s make this a familiar term that people understand. Let’s educate the medical community about this disorder.

I know you wrote this months ago. I just wanted to know what the reply was to your letter.

When we got the final diagnosis for my son, I sent out an email as well, discussing Sleep Apnea and Orthostatic Intolerance to all my family and friends. Some were supportive, others I never heard from.

I am now in the process of starting a blog on a sleep apnea website to bring more awareness. I will also cross-reference dys because my son has both.

Would love to hear what was the outcome.

Judi

Hi Judi,
I emailed the letter to about 50 friends/acquaintances. Within 15 minutes, I got an email from a woman I exercise with. She told me that she forwarded the email to her friends. Fifteen minutes after that she called me to say that one of her neighbors had just read the email and felt that the symptoms described and the Mayo video might provide the answers to her teenage daughter's undiagnosed illness of two years. I eventually spoke to the neighbor myself, and her daughter got an appointment with my son's POTS doctor, and she has been diagnosed with dysautomia (what the doctor described as POTS with extra complications, whatever that means). It was an awesome feeling to have helped someone and I'm really glad that I wrote and sent the email.

When my son was first diagnosed with POTS, I was really gung-ho about educating everyone in the world, especially doctors, about this syndrome. Then I came to realize that a diagnosis is not a cure, and all my energy went into trying to find ways to help my son alleviate his symptoms. He is a bit better these days, and maye it's time to get back to letting people know about this insidious illness.

I've read your other posts, Judi, and I know that your son is having some slight improvements lately. I'm so glad to know that, and I hope it continues.

Take care,
Lenna

Lenna, Just want to say I think that was very well written, and kudos for getting the word out!