By Tom Flavin
Our daughter, Emily, was 14 when she was admitted to Ronald Reagan UCLA/Mattel Pediatrics ICU for tests. Her diagnosis: Transverse Myelitis.
It all started approximately two weeks earlier when on a Friday, my daughter babysat two children who had head-chest colds. We have no way of knowing if this caused her to pick up a cold or virus. The next day, our daughter competed in a surfing competition in Oceanside, CA. She could have contracted a cold or virus from the water. The following day, Emily came down with a head-chest cold. We kept her home from school on Monday. She took an over-the-counter cold medicine. On Tuesday, she went to school and by Wednesday she needed to stay home due to a low fever.
We took her to her pediatrician. We were advised to watch her and let the cold/virus take its course and to let her doctor know if things got worse. Late Friday afternoon, Emily complained of an ear ache. My thought was inner ear infection (perhaps from surfing, but just a guess). We got over-the-counter medicine and notified her doctor’s office.
On Saturday, the low fever returned. We gave Emily fever reducing medicine. Late on Sunday evening, Emily complained of not being able to urinate. We scheduled an appointment for Monday morning and were advised via the telephone to have Emily bathe in baking soda water. The nurse over the telephone thought it could be a urinary tract infection.
On Monday, Emily tried to provide a urine sample at her doctor’s office but could not. The doctor advised us to go to the emergency room.
At Santa Monica UCLA Medical Center, Emily provided a small amount of urine. We were prescribed an over-the-counter medicine to help reduce pain while urinating. Emily continued to not be able to urinate.
On Tuesday, we took Emily back to the emergency room in Santa Monica and she was provided a Foley catheter and prescribed antibiotics. They took the catheter out and we were sent home.
On Wednesday, Emily was still unable to urinate, so I called her pediatrician’s office and requested a referral for a urologist. Emily’s pediatrician was not available, and the staff needed to get approvals. Through back and forth calls, they suggested that we take Emily to Ronald Reagan UCLA Medical Center. We did, and there they catheterized her and advised to continue antibiotics. The urologist suggested was not available to see Emily in the Emergency Department, so we scheduled an appointment for the next day.
On Thursday morning, Emily complained of being light headed, dizzy and unable to see. I thought that she may be fainting. Emily met with a urologist on Thursday and he gave us a choice of urinary tests, i.e. filling up the bladder, taking out catheter or waiting for a later date. Because of everything that led up to this point we asked Emily what she wanted to do, and she chose to wait until Monday for the test. This was also suggested by the urologist.
Over the weekend, Emily complained of sensitivity to touch on her arms and shoulders. She later complained about her one leg being asleep, then the other leg. We thought that it could have been from lying in bed, sitting, etc. which she had started to do more. On Sunday afternoon, we allowed Emily to visit a friend. When we went to pick her up at her friend’s home I noticed that she was walking slowly and unsteadily.
On Monday morning, we took her to see a urologist again for the test. Prior to this, Emily had trouble getting to the car. I had to hold her, and she moved slowly. Once at the appointment, I got a wheelchair. We were advised again to go to the emergency room because the doctor said that it may be more than a urinary issue.
Several doctors in the ER were super helpful and admitted Emily immediately for tests. She spent twelve days total in the hospital with five days in the ICU, three days in the main hospital, and four days in physical rehabilitation at CHLA. The doctors initially thought that it would be at least six months before Emily could surf again, if ever.
Prayer, perseverance, family, friends, and great doctors helped us get through the tough reality in the beginning. Googling Transverse Myelitis and seeking someone, anyone to learn from outside of the doctors was what I did. During that time, I was hoping to find a story or many stories of positive outcomes. In the process, I found Coach Karl Turk who is an amazing leader and survivor of Transverse Myelitis.
Coach Karl was written up in a CNN report, so I telephoned him at his place of work and introduced myself and the reason for my call. I remember telling Coach Karl while choking up that my daughter was diagnosed with TM. He listened. Learning more, anything more from someone who survived was what I was seeking for myself and Emily. Coach Karl and I spoke for about twenty minutes initially. Since then, I have called him numerous times and spoken about things not related to TM. Emily has spoken with Coach Karl too. He calls her sister.
Emily spent approximately three months in outpatient physical therapy and then Emily convinced her doctors and her parents to allow her to surf again. She has been doing so ever since. This past summer, Emily competed in three longboard competitions and was the Champion 1st Place in each at the age of 16. Now 17, she continues to surf competitively and is a senior in high school. She is in the process of applying to universities to start her college education in the fall of 2018. She wants to stay close to the ocean for obvious reasons. She takes a big interest in promoting that we each do our part to keep our cities, beaches, and water clean of pollution.