Wesley was diagnosed with severe Crohn’s disease last October during his fifth grade year; just after his 11th birthday. Though he has always been a happy child, Wesley began showing symptoms of this disease at least two years prior to diagnosis. He struggled with various symptoms, often having to stay home and cancel plans. He was unable to play sports with his friends, and often left places to rush home because he was sick. He was absolutely miserable.
Throughout this time, our family sought advice and medical treatment from many doctors, including his primary care physician and during multiple emergency room visits. We were always told the same thing, that Wesley was either dehydrated or constipated. Though we would pour water into his body, tried several over-the-counter medications, and adjusted his diet many times, nothing helped.
On the eve of his fifth grade camp, a sleep-over event spanning several days, he became extremely ill. His symptoms were severe and nonstop. We were desperate for answers as Wesley was fading away right before our eyes. He had lost 20 pounds in three months, seven of which were lost within one week. His physician referred us to a pediatric GI specialist, Dr. Jeffrey Teckman, at Cardinal Glennon Hospital in neighboring St. Louis, Missouri. After a battery of tests were performed we finally received a diagnosis of Crohn’s disease.
While we were relieved in a way to know what was wrong, we were terrified of the implications of Crohn’s disease on our son’s life. At a mere 84 pounds, Wesley was extremely malnourished and severely anemic. He needed treatment, no doubt, but we soon learned the treatment options can be more frightening than the disease itself. For instance, some of the side effects of treatments for Crohn’s disease are severe and can even be deadly. The staff in the GI department were amazing, and answered any and all of our questions. After much research and taking into consideration their medical advice, we knew that Wesley needed an aggressive treatment to survive – and to thrive. Despite our reservations, Wesley began a course of prednisone and infusions of Remicade straightaway.
Currently, Wesley receives Remicade infusions every five weeks as an out-patient at Cardinal Glennon Hospital. The staff there are amazing! We have spent several nights at the hospital with severe complications related to his suppressed immune system. The staff there are so caring and thoughtful, always conscious of the young patients and their fears. They are truly amazing people!
As I write this, Wesley is a healthy and happy sixth grader! Since beginning his treatments 10 months ago, he has gained over 40 pounds and grown more than 3 inches. The results have been nothing short of amazing! We finally have our happy boy back, healthier than ever. Our family now has to be very careful about exposure to germs because of Wesley’s suppressed immune system resulting from the Remicade infusions, but we all feel so fortunate that he has come so far in such a short time.
We pray that he continues to thrive, and we also pray for all children world-wide who suffer from this terrible disease as well. The effects of Crohn’s disease truly are sudden and severe, and can be life-threatening in many cases. Hopefully, one day there will be a cure. Until then, we continue to hope and pray daily, and ensure that Wesley gets the best care possible so he can continue to be happy and healthy.
[Editor’s Note: Jennifer Kiser a teacher and Mom to Wesley and his two older sisters, Valerie and Melissa. Wesley won the first ever ImproveCareNow patient-designed t-shirt contest in August 2015 and his amazing design is now featured on a limited-edition ICN t-shirt, which will be worn by many working together to outsmart IBD. You can show your support for Wesley and help ImproveCareNow outsmart IBD by purchasing a limited edition t-shirt with his design!]