Maddie Fergeson has shown team spirit as a mascot at both her middle school and her high school. Being a team mascot has given her the opportunity to support her schools, make new friends and separate herself from Crohn’s disease.
Four years ago, when she was 11, Maddie started exhibiting symptoms of Crohn’s. She initially required almost six months of IV steroids to get into remission. She was then treated with infliximab which resulted in a debilitating psoriasis that put her in a wheelchair. At this point, Maddie’s Mother, Kristie Fergeson, sought a second opinion from Ashish Patel, M.D., Gastroenterologist at Children’s Medical Center Dallas.
“Dr. Patel won us over the first time we met,” says Kristie. “He spent all weekend long from the time we were admitted, evaluating Maddie’s symptoms, running tests and working with a team to determine the best treatment plan.”
The whole-body team approach that Children’s provides patients with inflammatory bowel disease issues, like Crohn’s, includes specialists from pathology, surgery, psychology, immunology and clinical nutrition. It promotes open communication, collaboration and brainstorming for complex cases.
The most basic goal of treatment for children with Crohn’s is to achieve remission (the absence of symptoms), and once that is accomplished to maintain remission. ”Maddie’s course has been complex because she has a severe disease phenotype,” says Dr. Patel. “When I saw her, I stopped the infliximab. Her psoriasis went away and that’s when she was well enough to become her school’s mascot during sporting events.”
However, Maddie’s symptoms returned and have proven difficult to manage. For this reason, Maddie agreed to a semi elemental formula diet where she received all of her calories through a specialized formula, allowing her intestines time to rest. “She did this for six months and while it resulted in a clinical remission; she still did not heal completely, ” says Dr. Patel. “We are now weighing several novel therapies as options for Maddie in the hopes to avoid surgical intervention and get her off steroids. She continues to remain upbeat and positive in spite of the challenges her disease has posed.”
As is true with many chronic illnesses, support groups provide a level of strength many patients value. “In my opinion, a support structure is vital to dealing with this chronic condition,” says Dr. Patel. “Being involved in a support group such as Camp Oasis, a camp for children with Crohn’s disease and ulcerative colitis, and utilizing community groups like the Crohn’s & Colitis Foundation of America are very important.”
“Maddie participates in the teen support group started by Children’s GI clinic and in the summer goes to Camp Oasis,” says Kristie. “She likes participating in activities with other kids who have the same type of issues and concerns as she does and willingly shares her story, and offers hope and a positive outlook to others recently diagnosed.
Back in the Game
As a result of the severity of her illness, Maddie was unable to try out for school mascot this school year. However, she was offered, and accepted, a position as manager of her high school drill team. “It’s less demanding than team mascot and still allows her to show her school spirit,” says her mom. “She’s back with her network of friends and back supporting school sports.”
A Mother’s Advice
Maddie and I both feel it is extremely important to have a good relationship with your doctor. It is much easier to self-advocate or advocate for your child when you have a mutual respect with your child’s doctor. We feel extremely blessed to have found Dr. Patel and have 100% faith and trust in him; yet as a parent I am the one who truly knows Maddie, her symptoms and the day to day toll this disease plays on her. I can openly discuss any concerns with Dr. Patel at any time and know that he will truly listen and search for answers.
Maddie has spent about 60 days inpatient this year (4 different admissions) we have very strong bonds with the nurses on the GI floor and with Kimberly Crews the Child Life Specialist on the GI floor. It’s important to build those relationships with the staff that actually cares for your child. They are also your advocates and can make your hospital stay a positive experience.
Crohn’s is one of the most common types of inflammatory bowel disease (IBD). It can be controlled with treatment but cannot be cured.
Crohn’s affects all layers of the intestinal wall, causing inflammation and swelling as well as ulcers.
- Diarrhea (sometimes bloody)
- Growth failure
- Stomach cramps or pain
- Weight loss