By Teresa Rosenbohm
My daughter, Josy, has been ill since before sixth grade. In seventh grade the symptoms were worsening, eighth grade was horrible, and freshman year was unbearable and filled with severe depression. Now in her sophomore year, we finally have a diagnosis and she can look to her future with hope, but what a ride it has been.
My daughter always had a passion for singing and dancing — she was great at both. She was always a happy, vibrant, and energetic child. Her symptoms started in late 5th grade with heartburn, shortness of breath, and dark circles under her eyes. Fatigue began in 6th grade but was manageable, that is until 7th grade, when life took a horrible turn. The happy little girl she had been; the one who would use her voice for song was no more. The next few years brought many tears and a lot of physical and emotional upset.
She suffered from headaches, shortness of breath, acid reflux, and nausea all day, which worsened when she ate. She experienced dizziness, visual disturbances, severe sweating, chronic pain in her neck and back, severe and extreme fatigue, brain fog, and chest pain.
She could no longer keep up with friends in PE. Walking was an exhausting task and breathing during exercise was not easy. My daughter spent most of her 8th grade and freshman year lying in bed. She stopped everything. She no longer invited friends over, went to the mall, went outdoors, she would not even watch TV, and I knew it was bad when she quit singing, even in the car. She wanted to do all of the things she once enjoyed, but would explain to me that she was just too tired to even get up. She would say, “I feel dead.” We started counseling in 8th grade because I knew she was getting depressed.
All of our lives changed. We would no longer leave her home alone because of the depression. She was put on Zoloft, which only caused more fatigue. Talking to her counselor once a week seemed to be good for her mood. She needed someone to talk to. Everyone wanted to blame depression for her failing health. I guarantee you my daughter was depressed. Who wouldn’t be? But, as her mom, I knew the depression was a symptom — not the problem. She was now bruising easily and the fatigue was worsening. She would fall to the ground when she got out of bed and when walking in from the car. It was sometimes difficult to walk to class at school without feeling faint. There were no smiles or laughter.
We finally got an appointment to the sleep lab and she was diagnosed with sleep apnea, restless leg syndrome, and, later, narcolepsy with cataplexy. We had hoped that her CPAP would help, but it didn’t. We had hoped that the narcolepsy medication would help, but it didn’t. When it seemed like all hope was lost my daughter looked me in the eyes and said, “If the doctors can’t help me, and this is how I will have to live the rest of my life, I will not do it.” I was heartbroken and desperate for someone to help her.
We forced the doctor to send us to Mayo Clinic and our first appointment was with her pediatrician. The doctor spoke to us for an hour, handed us a brochure, and said, “This is what I think she has. Her test is today.” The next morning in our hotel, I received a call from Mayo Clinic stating that our daughter’s test was positive. I cried because I was happy to have a diagnosis, cried because I was sad, and cried because I was angry. We spent four long years suffering, begging for someone to just listen, and in a single hour the nightmare was over.
Josy has autonomic dysfunction with postural orthostatic tachycardia syndrome (POTS). It was diagnosed with a tilt table test. Her blood does not circulate properly and can pool in her hands and feet. They explained that anything automatic, such as digestion, blood pressure, breathing, and temperature do not work properly for Josy. It can take 10-minutes for blood to reach her heart every time she gets up. A person’s heart rate can double and triple before the blood reaches the heart; hers doubles.
Mayo Clinic explained that most teens with this condition drop out of high school and end up in wheelchairs. They said that it is often mistaken for laziness. It is very debilitating and it affects one out of every 100 teens.
The treatment is fluid, water, salt, and 30-minutes of exercise a day. Her day starts in bed with a beta-blocker, eight ounces of fluid, and some salty crackers, before she gets up. She waits about 10 to 20-minutes before getting up to complete three exercises designed to get her blood circulating. The best part is that she is expected to outgrow this condition in her college years.
Josy was diagnosed this past February and is feeling better. All of her symptoms, except for the extreme fatigue and brain fog, are gone, and the fatigue should be gone in another month. My hope is that Josy’s story can help someone else.
Photos courtesy of OSF Saint Francis