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  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

My New Son


By Melissa Zoepfl
October 2004

This is a story about my son Mark. Mark is 11 years old and very bright. He started middle school this year and is in all honors classes and is taking 8th grade math as a 6th grader. He is also on a travel soccer team.

A few years ago, Mark's teachers suggested that he be evaluated for Attention Deficit Disorder--that he wasn't always well focused or organized. He was evaluated, diagnosed and put on medication. While he seemed a little better, he was still a kid who day-dreamed and needed a lot of reminding. A year or so later, a coach noticed that he was breathing hard when he ran and suggested he be evaluated for asthma. He was evaluated, diagnosed and put on medication. He seemed a little better, but he continued to be short of breath during activities. The doctors continued to adjust his medication, but he never had dramatic improvement. I watched him closely last spring at sporting events. It seemed to me that he really struggled to run. He had a pained look on his face and seemed to take a long time to get his breath back. He was clearly trying very hard, but he wasn't able to keep up with his peers on the soccer field. I asked our pediatrician if we should consult a cardiologist. I knew that somehow he wasn't getting enough oxygen, and if it wasn't his lungs failing him, maybe it was something to do with his heart. Our pediatrician didn't think it was time to do that, and he suggested we try adjusting the asthma medication yet again. We tried, but there was still no improvement.

Our insurance allowed us to go to specialists without a referral. I finally decided to follow my intuition and made an appointment with the pediatric cardiologist who was closest to our house and in our insurance plan. I wasn't sure what to expect--how would the doctor react to a mother who said that her son got winded when he ran, but had no other symptoms and no referral?

As it turned out, it was a wonderful experience. I was able to get an appointment quickly, and when we arrived, the nurse gave Mark an EKG, and then gave him a test for his heartbeat lying down and standing up. I assumed that was the standard workup for new patients. Then we saw the doctor. I explained Mark's problem running, and he said he already saw something that could be causing it. He showed me the numbers for Mark's heart rate--80 lying down and 130 standing up. He proceeded to do an echocardiogram and told me that Mark's heart was just fine. He explained that it looked like Mark had POTS and that it was a circulatory problem caused by his blood vessels not constricting and pushing the blood adequately to his heart. He asked questions to understand his ADD symptoms. He said it was possible that the POTS was causing his lack of focus as well. He said it was likely why Mark always paced when he thought, and took a deep breath just before he spoke. These were actions he instinctively took to maximize the oxygen to his brain. (We found out later that the nurse noticed this breathing pattern and suspected POTS, which is why she measured his heart rate lying down and standing up.) The doctor scheduled some lab work and a tilt table test to confirm the diagnosis.

Mark had the tilt table test, which completely confirmed the diagnosis. He just about passed out within 10 minutes, simply from not being able to move his feet. I was floored. How could my son's circulation be so poor that he can't stand for 10 minutes and I had no idea? The doctor had said that this condition is often caused by a virus. Mark had a serious virus when he was about 1 year’s old. If POTS was a result of this, he had poor circulation for almost all his life. I felt terrible.

The doctor prescribed florinef and proamatine. The effect of the medicine was remarkable. Almost immediately, we noticed a change in Mark's focus. He would remember things we asked him to do--even when we asked him to do something later in the day. He seemed much more in tune with the activities around him--in conversations, in watching sports, in whether it was time for him to get ready, whatever was happening. He had always been a bit oblivious to things around him, but I assumed it was just his "absent-minded professor" kind of personality.

He no longer takes a deep breath before he speaks. He still paces a bit, but I think that is habit and it seems to be diminishing. When he runs in sports, he no longer looks pained. He gets tired, but he is much more like a normal kid. He no longer runs moving his head from side to side (which may have been another action to get blood to his brain). His sleeping became much more normal. His whole life he has been a wiggly sleeper--ending up sleeping with his head by the foot of the bed or sprawled sideways in bed. I had always assumed it was just his sleeping pattern. Now he goes to sleep much more easily, wakes up with his head on the pillow, and is cheery and alert. He had always been a bit grumpy and hard to wake up.

Even his posture has improved. I'm not sure how it's related, but he definitely stands up straighter instead of slouching.

In short, it's like having a new son. I give him so much credit for being successful in school and sports for many years when it's obvious to me that he hadn't been getting adequate blood to his brain. Now I think life will be easier for him, and he'll be able to succeed even more.

I feel so incredibly grateful that we happened to walk into a cardiologist's office that specializes in POTS (that was completely luck or maybe a guardian angel). I have now read so many stories of people suffering much more severe symptoms and wandering from doctor to doctor for months or years. I am also so thankful we caught this now rather than years from now. I think that may be why the medication is working so well. The doctor feels that Mark will not need to be on the medication forever--maybe for several years at most. He will continue to monitor Mark and encouraged him to continue in sports. If he continues to stay so focused, we will talk to our pediatrician about coming off the ADD medication. I'm so glad this story has a happy ending--I just wanted my son to be able to run more easily, and I ended up with a treatment that is making every aspect of his life better. Hurray!!

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