Pediatric Postural Orthostatic Tachycardia Syndrome: Desiree's Story

My daughter's name is Desiree and she is nine years old. Desiree has just been diagnosed with P.O.T.S.

When Desiree was four years old she stared having dizzy spells. She has had countless tests over the years. My mother and I always knew something was not right with Desiree. This last year Desiree had an episode at school that was very much like a seizure. She spent numerous hours in the E.R. with speech, balance difficulties and tremors. She was also very distant-like she was somewhere far away, as I have seen so often with her before.

She asked me "Mommy what is wrong with my body?"

Unlike having a seizure, Desiree could tell you everything that happened during the episodes. All tests showed nothing wrong and we followed up with a local pediatric neurologist. We were told that she was having panic attacks and Migraines without the headaches. I couldn't buy this. I have worked as an RN in neurology in the past and I felt that I needed to push harder for Desiree. I had to be able to answer her question and that was my driving force.

All the staff at school witnessed her episode and agreed that something was very wrong. I called the Mayo Clinic. I wrote them a letter as well as having the school write a letter. I was able to get an appointment in pediatric neuro.!!

In two days at the Mayo Clinic, we had our answer. Desiree was diagnosed using a tilt-table test. This is all new to us. We do feel very grateful, as we were one of the lucky ones to walk out of the Mayo Clinic, as I pray for those children there.

The Mayo Clinic, diagnosed her with postural orthostatic tachycardia syndrome and they attribute this disorder to an immature autoimmune system. Hopefully Desiree will outgrow this. For now, we handle each situation as it comes up. Desiree is most affected when she is sick, tired or dehydrated. Desiree's symptoms get better with water so we always carry lots of water.

There are days in which she has to stay at home. We gave her a wooden red apple to place on her desk so when she is having symptoms she can let her teacher know. That way she doesn't have to say anything verbally. Our school is wonderful in handling this as well.

We are happy to share our story and I was happy to have found this web site...I was a mess for so long knowing that something was wrong with my daughter and no one could give me answers for so long.

Thank you,

Debbie

If you would like more information about pediatric dysautonomia you may want to check out dynakids.org They have a great dysautonomia youth support network as well as stories about other young adults suffering from some form of dysautonomia.

If you would like to learn more about my personal health, experience read My Personal Health Journal Or you can read about my Symptoms

Reader's Personal Health Experiences:

Postural Orthostatic Tachycardia Syndrome (POTS)- Julie's Story

Dysautonomia - Katrina's Story

Postural Orthostatic Tachycardia Syndrome - Danielle's Story

Below are two articles you may find interesting:

Neurally mediated hypotension (NMH) and positional orthostatic tachycardia syndrome (POTS): Part I: Associated neurological abnormalities.

Postural Orthostatic Tachycardia Syndrome: Patient's report on causes, symptoms, and treatment

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