Not child’s play:

Living with juvenile arthritis

By Mary Beth Galarneau

Racing around her Cohoes home with her little brother in tow, Kolby Doemel is an active, energetic, six-year-old girl with big blue eyes enhanced by the kind of long, dark eyelashes that most women would die for. Just like her mom, she has already developed a love of shopping, has a crush on Zach Efron and is obsessed with teen singer Hillary Duff. She’s also an avid reader and loves word puzzles. On this day, she was determined to get her lose tooth to fall out by eating an apple and wiggling the stubborn tooth after each bite.
What you would never guess from looking at this spunky kid is that Kolby suffers from juvenile psoriatic arthritis. On top of that, she recently was diagnosed with fibromyalgia, suffers from chronic fatigue syndrome and was born with severe reflux disease. Her wish, especially during painful arthritis flare-ups, is “to just be a normal kid.”
Her mother, Rainbow, frequently reminds her that everyone has to bear their own burden, or, as his mom puts it, their “something”. As an example, she told Kolby that her 16-year-old brother can’t drive past nine o’clock, that her four-year-old brother used to lick everything (that garnered a laugh from all three of us), that her 12-year-old sister only sees the good in people (which can be a negative thing, said her mom) and that her father’s athletic ability diminishes as he ages (again, another chuckle).Commiserating may be helpful, but it doesn’t stop Kolby wishing away this debilitating disease.

Kolby was just 18-months old when two of her fingers became swollen and she was hesitant to let her parents wash her hands.
Her pediatrician thought she had been injured, and told Kolby’s parents that the pain would subside. But it didn’t. Instead, her fingers got bigger, felt hot to the touch, and couldn’t clutch the simplest of things. A local hand specialist tested her for many things, including Lyme disease, until he finally diagnosed arthritis.
Kolby’s form of arthritis—juvenile psoriatic—usually affects smaller joints. Currently, seven of her joints are affected: four fingers, two toes and an ankle. Lately, though, she’s been experiencing knee pain, which is even worse in the morning.
When the diagnosis came, Rainbow was pregnant with her fourth child.
“I felt sad. I was in shock and uncertain of what it meant.”
But those feelings quickly gave way to determination. In order to become a voice for her daughter, Rainbow decided to become an advocate for her, learning everything she could about the disease.
“Knowledge was power, and I could only help her through knowledge and understanding of the disease,” she said.
Though most forms of arthritis aren’t genetic, the type Kolby has is; it’s on both sides of her family, affecting four other family members.

Nationally, over 300,000 children suffer from Juvenile Arthritis (JA). New York State has the third largest population affected by the disease, with over 18,000 children suffering from it. In the Capital Region alone, over 3,000 children are affected.
Despite these staggering numbers, there are only 200 pediatric rheumatologists in the country. New York State has eight doctors, most of which are in New York City while one is in Rochester.
In the Capital Region, there are none.
“For anyone in the Capital Region who has it, you need to travel an average of three hours to receive care,” said Rainbow.
When Kolby was first diagnosed, she was seen by a pediatric rheumatologist from Connecticut who came once a month to Albany Medical Center. After three months, though, she stopped coming due to the travel involved, and Rainbow and John were forced to consider a different plan of action.
That plan included getting a second opinion. In her research, the name of a Boston doctor kept popping up. In spring of 2004, the couple took Kolby to Boston Children’s Hospital to see Dr. Robert Sundel. It was an instant match and he continues to follow her care today, seeing her every two months.
“We love him,” said Rainbow, with Kolby echoing the sentiment. Although Kolby initially was shy around Dr. Sundel—“she used to hide in the curtains of his office,” her mom said—she has definitely come around.
The thing that she likes most about Dr. Sundel is that he treats Kolby as the patient rather than a muted sufferer. “He directs all of his questions to her and allows her to express how this disease affects her.”

Kolby’s initial treatment from her first doctor was Vioxx, which simply masked the symptoms while doing little to treat the disease. (Incidentally, the drug was pulled off the market in 2004 due to safety concerns.) Her new treatment from Dr. Sundel consisted of weekly dosages of Enbrel, an injectable drug, and Methotrexate, a pill form of chemotherapy given in lower doses for those with arthritis. Kolby experienced similar side affects as cancer patients, including hair loss and mouth sores.
“We need to attack the disease and preserve her joints until the day we find a cure,” Rainbow quoted Dr. Sundel as saying.
Other non-traditional forms of treatment include pool therapy, which is highly recommended for people with arthritis, and what Rainbow calls “dog therapy”. When the family built their home in 2004 they added a pool with a heater. And just six months ago, they got a chocolate lab named Reese, which keeps Kolby active.
Two years ago, she went off all her medication and was declared to be in remission. The family even had a party to celebrate. But it was short lived. After four months, her lab results were deemed “horrendous” and her joints were inflamed. This surprised Rainbow because Kolby never once complained.
Recently, Rainbow has tried taking a more holistic and wellness approach to her daughter’s health by trying to incorporate anti-inflammatory foods into her diet, which admittedly can be hard with a family of six, and is also considering acupuncture. This past April, she decided to take Kolby off of all of her medication to give her body a break.
“If you’re going to try to stop medication, summer is the time to do it,” said Rainbow, adding that she’ll decide whether to keep Kolby off the medication after they meet with her doctor this month.
An everyday part of her treatment is to learn to deal with the pain and stay active, per doctor’s orders. This includes less napping during the day, something Kolby does because she suffers from insomnia, and getting at least 30 minutes of vigorous exercise a day. But it’s not as easy as it might sound for someone suffering from juvenile psoritiac arthritis. On a family vacation to Wildwood, NJ, this summer, Kolby was so tired and in so much pain that she couldn’t walk the boardwalk.
Still, unless you were aware of Kolby’s circumstances, you would never guess what she is going through because she is just as active as any child her age and doesn’t show her pain. She rides her scooter and loves walking her puppy. She plays soccer and softball, where she excels at hitting the ball and racing around the bases. She never complains to anyone, but once she gets in the car to go home, she sometimes breaks down in tears.
In school, her gym teacher is aware of her disease, though, true to form, she doesn’t show it. “Kids don’t want to be different,” said her mom. Just like on the field, she actively participates with her class. On the rare occasion that she has to sit out, her gym teacher knows she must be having a really bad day.
And of course, her little brother, Jake, never lets her rest. “He keeps her active and never lets her lie down,” Rainbow said.
Kolby’s disease doesn’t just affect her; it affects the entire family, but they rally together. One of the older kids might comfort her when it’s time for her weekly shot and everyone will take walks or go on bike rides together.
“Her determination keeps her going,” Rainbow said.