14 year old Romy conquering Multiple Sclerosis (Part 1)

Life Before Illness...
Romy came into the world on her due date, healthy, happy and smart beyond her years. I remember pushing her in her stroller when she was about 15 months old. She pointed to the power line above and asked “That?” I sighed wondering how best to explain a power line to a 1-year-old. I said, “Romy, that line brings power to our house.” Right away she said “Oh, T.V.!”

Romy was formula-fed as an infant, as breastfeeding was not an option. She received all the typical childhood vaccinations and was prescribed antibiotics on several occasions for strep throat. We all ate a Standard Canadian Diet – very similar to the Standard American Diet — with lots of carbohydrates and sugar.

Looking back, I think what set her up for her eventual illness was a series of stressful events during her first decade. First, her grandparents, who were living with us at the time, divorced when she was two. We then moved about 4 hours away, which was especially tough on Romy since she was very close to her grandmother.

I remember there was about a week during this time that Romy vomited every few hours each night. Pediatricians couldn’t find anything wrong and chalked it up to stress, which was likely true. When Romy was 6 her father and I divorced.

By the time Romy was 10, I had multiple health concerns: severe IBS, anxiety, acid reflux, and other troublesome gut-related conditions. I decided to improve my own health by following a Paleo diet — but that’s a story for another time.

Strange, Unexplained Symptoms...
At 14, Romy was a great student and emotionally stable and mature for her age. Yet suddenly, at the end of 8th grade, she began to struggle in math and her grade fell to a C. I hired a tutor for the summer to help her catch up and prepare for 9th grade math. As the tutor reviewed math concepts and problems with her, Romy was like a deer in the headlights. She seemed unable to absorb the concepts and put them into practice.

I was confused and frustrated, not understanding what was happening – was this typical teenage attitude setting in, or something else? At the end of the summer I noticed that Romy’s right eye was not moving in conjunction with her left when she looked to the left. I videotaped this unusual phenomenon and set up a series of appointments, starting with an optometrist, then an ophthalmologist and finally a neurologist. By the time we were able to see the doctors, her eye had corrected itself, so the doctors were unable to see for themselves what had been happening. Were it not for the videotape of Romy’s strange eye movement, the doctors might have just sent us home.

Once the neurologist saw proof of the strange eye movements, he admitted Romy to The Hospital of Sick Children in Toronto. One week and a battery of tests later, the team of specialists informed the family that Romy had 8 lesions on her brain and 1 located on her cervical spine. The diagnosis was shattering: multiple sclerosis (MS). We were told that the condition would progress, and that there was no cure. The hospital team handed me pamphlets from the MS Society and a list of available drugs to choose from. We were sent home with instructions to return for a follow-up after having made a decision about which drug we would like to start with.

Synchronicity Leads to Wahls Protocol...
Two years earlier, while on my own IBS healing journey, I had spent a week in Austin, Texas, at a Paleo conference. There I heard Dr. Terry Wahls, Professor of Medicine at Iowa State University give a speech about her own healing path from progressive MS, mostly by adopting a nourishing, plant-based Paleo diet. I was deeply impressed with her healing story and remember feeling compelled to go up, meet her and have her autograph my Paleo Toronto T-shirt. Little did I know that two years later my own teenage daughter would be diagnosed with the very same disorder!

Facing Fear...
Both Romy and I knew we didn’t want to experiment with the MS drugs suggested by the neurologist. We studied the research on the drugs offered, and believed that not only would the medications not heal the multiple sclerosis, but they might even exacerbate the condition. Even so, we were riddled with fear that we might be making the wrong decision. Fear is dangerous, and we had to deal with that first. I was afraid for Romy to take the drugs, and afraid of what would happen if she didn’t.

For support, we turned to the Wahls website community and a functional medicine nutritionist with whom I had already been working. Both were instrumental in putting our fears to rest. We recognized that any decision we made involved risks, so we decided to risk the natural healing path – instead of the greater risks of the potentially ineffective prescription medications and their likely side effects.

When asked about how she dealt with the diagnosis, Romy responded, “I felt a bit queasy about it at first, but then thought this was better than something like a brain tumor and that between my mom and Matt [our nutritionist] and me, we could deal with this.”

to be continued...
shannon stark