The story of Tracy
Our odyssey with rare diseases began in November 2014 when my then 14 year old, intelligent, and athletic son, Jaden, was diagnosed with Chiari Malformation. His diagnosis’s quickly expanded to include Syringomyelia, EDS (Ehlers-Danlos Syndrome), POTS (Postural Orthostatic Tachycardia Syndrome), and ultimately, Lyme disease and Babesiosis. We were forced into becoming medical detectives as we unraveled his mysterious diseases.
Jaden was in honors classes and excelled at basketball. He had dreams of being a surgeon. In ___ his eye sight suddenly went downhill. He also started to get frequent migraines. Previously very healthy, he also suddenly started to get sick much more than usual, having recurring ‘viral infections’. He complained of severe leg pain, which was contributed to ‘growing pains’.
In 2014 his vision issues and migraines started to worsen. They were often brought on by exercise. His basketball games were followed with episodes of vision loss and severe migraines.
In Nov 2014, an MRI showed he had Chiari Malformation, a rare condition which occurs when there isn’t enough room for the brain, forcing the cerebellum to be pushed into the spinal column. This blockage, if not addressed, then leads to Syringomyelia, otherwise known as a syrinx, which grows in the spinal column.
In Dec 2014, Jaden had Chiari decompression surgery. Afterward, the surgeon came out and told us the lining of his brain had been thickened and was hard to cut through, as if he’d previously had an undiagnosed infection. She asked if he’d had meningitis. He’d had no infections that we were aware of. He had a rough recovery, but we thought the worse was over. We could never have imagined the nightmare that was only just beginning.
Two weeks after surgery, Jaden had excruciating headaches. We made 5 trips to the ER. The doctors were stumped and could find no reason for his pain. By the 5th ER visit, the pain had extended to his front teeth, in which he had root canals. Out of desperation we went to an orthodontist. An oral MRI showed he had abscesses behind both front teeth. Three weeks after brain surgery, he had two root canals cleaned out and packed with antibiotics. Again, we thought we were in the clear.
Jaden was released to return to school and return to playing basketball by the end of January 2015. Unfortunately he was still having headaches and started to experience even more symptoms. He was attending school sporadically and couldn’t even think of playing basketball. His legs and joints began to ache, he had extreme fatigue, and his heart rate and blood pressure would spike upon standing, making him dizzy and light headed. He had brain fog and was having hard time concentrating on school work. He wasn’t standing up straight, his eyes were unfocused. He literally looked like he was drunk. I lost count of how many doctors we saw during this time.
Facebook support sites have been our lifeline throughout this ordeal. On one of the Chiari sites I was seeing frequent reference to something called POTS. Jaden seemed to fit all the criteria. In late May 2015 it was confirmed, he did indeed have POTS. He was started on a beta blocker. After three day’s he woke up feeling better. We thought we had FINALLY found the magic answer. He played basketball through the summer, and started his freshman year of high school. The first 6 weeks of school went by and every day we were thankful for the fact that he was in school, getting good grades, and life was slowly returning to normal. Jaden was enjoying high school and looking forward to basketball tryouts.
It was also during this time that Jaden was diagnosed with EDS, a connective tissue disorder that often causes Chiari. Over the next few months he had bouts of pain in his knee and shoulder. We thought these were basketball injuries, although MRI’s showed nothing. We attributed the pain to EDS. He played basketball as he could, sitting out when his the pain in his knee was bad.
Unfortunately things changed in mid-September. Jaden had an upright MRI which showed his syrinx had grown back. The MRI was extremely noisy and triggered a migraine. Within a few days he was sick, with another ‘viral’ infection. He continued to go downhill. His headache pain and leg pain hovered between an 8 to a 10+. His pain seemed to migrate. One day it was his left leg, then it was his shoulder, then a knee, then a wrist. The pain was unbearable. He also had extreme fatigue, sleeping 15 hour stretches. He was hyper sensitive to light and sound, developed a tremor, and was sweating profusely. We again searched out doctors and emergency rooms for answers. Two doctors said he was just depressed. One said he was avoiding school. He wanted nothing more than to be in school and playing basketball. Not only could no one tell us what was wrong, no one could give us anything for his pain. We turned to medical marijuana which is thankfully legal in AZ because it was really our only option. It offered a bit of a relief, but did not eliminate the pain entirely. He quit attending school in October 2015. He missed basketball try outs and his friends drifted away.
We again turned to Facebook. I was now monitoring the POTS Facebook site and had seem someone post something about Lyme disease with a reference to a bulls eye rash. I had a sudden flashback to our vacation to northern Minnesota about 4 years earlier when Jaden had circular rashes on his neck/hairline after a weekend of camping. We had waited to take him to the doctor until we were back home in Arizona. His pediatrician said it was nothing and we hadn’t questioned it. I grew up in Minnesota, it never occurred to me that it might be a tick bite, or that a tick bite might lead to brain surgery.
Upon more research into Lyme, we read about something called Babesia, a Lyme Co-infection. It often causes POTS, and the symptoms overlap. Again, Jaden had every symptom. We knew he had Babesia before the test even came back. The doctor asked if his pain moved around, to him that was the key identifier of Babesia. While Jaden’s test results did not come back CDC positive for Lyme, they did show he had Babesia, which unfortunately is very hard to treat.
Trying to figure out the nightmare of Lyme disease has made brain surgery seem like a walk in the park. Trying to find a doctor who will treat Lyme has been near impossible. Much of the treatments are not covered by insurance, and what all Lymies know is, “you’ll get worse before you get better”. While Jaden is now on oral antibiotics and a counter full of supplements and tinctures, it is impossible to describe his daily suffering and symptoms. He was forced to withdrawal from school in October 2015. He is now on homebound instruction for 2 classes and has a hard time sitting up for just 90 minutes. A trip to the doctor wipes him out for days. He spends most of his days in bed. At this point, we don’t know what his future holds. Babesia can go into remission, but it never really goes away. Jaden still talks of going to UCLA and becoming a doctor. He still collects basketball shoes. They line up in his room as we anticipate the day that he may wake up with a pain level under 5. Until then, we continue to search for relief and hope for more recognition and research in treatment for Lyme disease and Babesia.
Looking back now, it’s my belief that the initial Lyme or Babesia infection caused the thickening of the lining of his brain, compressing his brain, and ultimately caused his Chari. The tick bite happened when he was about 11, so this just happened to occur during a time that he had a major growth spurt. While some of Jaden’s sprains and joint pains may be from EDS, we now belief most of his pain is from Babesia.