The Start of Our POTS Journey
I will never forget the night that my daughter came downstairs from her room and handed my husband and I a sheet of paper containing information on POTS. As she handed it to me she had tears welling up in her eyes and when she spoke her voice started to crack. "Mom, this is what I think is wrong with me". It was a surreal moment and the kind that stops everything---the moment when all the pieces to the puzzle start to fall into place.
We don't know when it started or why. All I can tell you is that my daughter suffered from general and unspecific problems for a long time. Let me just say that I practiced medical malpractice law for a long time so I have a knack for researching and understanding medicine. Moreover, I know how to get my way when I want something followed up on. The night my daughter told me she thought she had POTS my biggest emotion was failure. Rationally, it should have been fear or nervousness or empathy. And yes, I felt those things. But, if it was true then I had failed her. I should have been the one researching it. I should have been the one being proactive for more tests and follow-ups. I should have been the one determined to find the reason for her health problems. But I wasn't. Our doctor wasn't. It was my 14 year old daughter, Maggie.
Over the years Maggie has had referrals for all kinds of general symptoms that I felt had gone on too long. But I had a good relationship with our doctor and I trusted her when there was always an explanation for the general and vague symptoms. Even when my daughter started fainting---I trusted the reasons. In eighth grade she fainted three times. Twice it was during chorus on risers under hot lights with what they concluded as "locked knees". The third time was at a concert in a hot and crowded room. All explainable. To this day we don't know if she had POTS at that time or not.
All I know is that sometime during her Freshman year in high school my daughter changed. She went from being an A student to a B student. Mind you, that's not horrible and in fact, being a B student is spectacular. It's just that Maggie has always been an A student. She was on top of her schedule and homework. She remembered everything. She was social. She was outgoing and involved. Then it was all different. She forgot things. She stopped being social. She stopped eating well. She came home from school and went to bed, often for the night. I couldn't get her up for school in the morning. She didn't feel well. She changed.
Visits to the doctor didn't help. The doctor and the school tried to diagnose her with anxiety, and I think they would have diagnosed me with it as well if they could. I cannot tell you how many times I had to tell them that "My daughter does NOT have anxiety". I really hate that in the back of my mind they made me wonder if the words I was speaking were the truth or if they were right and I was in denial.
The night Maggie told me about POTS was the first night I realized how sick my daughter was and just how much she kept hidden from me. THAT made me feel even more of a failure as a mother. Was I so wrapped up in my own career that I didn't know what was going on? I WANTED to believe it was general and vague symptoms she would get over as we were told. HOW did I not know it was worse than that?
"So EVERYTIME you get up you are dizzy?" She nodded yes.
How long had this gone on? We don't know, she doesn't remember. Why didn't I know?
Her joints have always hurt her. Her stomach has always hurt. She's had vague complaints and lots of missed school days that I had to come up with a reason why I was keeping her home from school again. How do you call the school and say "she just doesn't feel good"?
I felt guilty, as if I somehow caused this condition or could have prevented it. Was it something I did or didn't do? Since we can't point to an event or illness, how can we know? All I know is I can't let that guilt prevent me from now working on getting my daughter well. I have to be her protector, her advocate and her caregiver. I cannot rely on other people to help when most people don't even understand.
As I read the description on POTS I also knew that POTS is what my daughter has. Yes Google provided the answer and I absolutely dreaded broaching this to our pediatrician. "Hi, we found this on Google and we think Maggie has it" never goes over well to an experienced medical professional. But who else knows her body and symptoms better than my daughter?
I've since come to learn that POTS is a difficult diagnosis to make and that it often takes YEARS of seeing many different providers before a POTS diagnosis is officially made. Our diagnosis was quicker than that once we became aware of POTS. But for how long Maggie had it, we just don't know.
When my daughter made me aware of POTS we already had a visit with the doctor planned. Probably a follow-up visit as she had been very ill that winter. A classic sign of POTS is a rapid increase in heart rate upon standing, causing dizziness and lightheadedness . I did not know that this had been happening to Maggie but she did. She installed an app on her phone that measured her heart rate and noticed it always greatly increased when she stood up and that she felt dizzy. Fortunately our doctor did a test on Maggie for her heart rate and blood pressure at that next visit. Unfortunately, even though that was abnormal, they still put her through testing for anxiety, celiac disease, anemia and other diseases. They told her to drink inordinate quantities of gatorade because she was simply dehydrated. We were told she would get better with a little gatorade hydration. It was then that I had to become my daughter's biggest advocate to the school and the doctors' offices to convince them it wasn't anxiety or simple dehydration and to get a referral to a cardiologist. I was stressed and angry for a long time. There were days I simply hung up on the medical provider office I was speaking to out of pure frustration. Round and round with trying to get the proper referral and battling the insurance benefits. But nothing would prevent me from getting to a diagnosis---not the school, the doctors or the insurance company. When they wouldn't make the diagnosis and there was a day her heart rate was up to 190, I took her to the ER and got a referral to a cardiologist. Unfortunately it still wasn't easy because the cardiologist we were referred to was not in our insurance plan. More tears and more frustration. But in the end we wound up exactly where we were supposed to be.
In April 2018, just two weeks shy of her 15th birthday, Maggie had an appointment at Lurie Children's Hospital in Chicago with the Chief of Pediatric Cardiology in the POTS clinic. It was there that she was finally diagnosed with POTS. It was then that our recovery journey could begin. (Note to everyone: Lurie Children's Hospital in Chicago has amazing doctors and staff and we are so fortunate to be near a city with a POTS clinic).
POTS is a form of dysautonomia characterized by orthostatic intolerance and defined by tachycardia when assuming a standing or upright position and a marked decreased in cerebral blood flow and pressure.
This isn't meant to provide you with all the information on POTS symptoms, diagnosis and treatment. This is simply to let you know about this thing called POTS that has come into our lives, how we got to this point and how it affects us. Through the use of this platform I hope to help bring awareness to this condition. I've been told there is no cure, but that many have gone on to have their POTS resolve. We hope and pray this happens to my daughter. On my end, I will do everything I can to make it resolve. In the meantime, I am devoted to giving my daughter the best possible chance of beating POTS that I can. We are all in on this treatment and she is already improving. Her labs are now normal. She hasn't fainted in over a year. Her fatigue is starting to decrease and I notice she has less "brain fog". I will post how we live with POTS and the steps we are taking to make these improvements. If any of this helps you, or you have any tips for us in return, feel free to connect. Please note, I am not a medical doctor. I can only tell you the things we are doing to make Maggie's body stronger.
My Maggie is a POTS Warrior. She bravely fights a silent chronic illness. I hesitated telling her story because I don't want people we know to treat her differently. You didn't know in the past and you treated her like a normal teen so please continue to do so. What she has is not contagious and it won't harm anyone. She still exercises, babysits, mows the lawn and does chores like a normal teen. But she IS different: she is resilient, aware, strong, smart and positive. This is our journey as we know it.