Isaac’s SCD Journey

My family reside in north central Indiana. In 2009 our son Isaac was diagnosed at the age of 10 with juvenile arthritis after suffering knee, ankle, and wrist pain for a few months. Right before Christmas in 2011, he was diagnosed with Crohn’s disease, and now his arthritis is considered an outlying symptom of Crohn’s. Isaac was prescribed prednisone and the GI doctor wanted to put him on an upper level medication right away.

As he was weaning off the steroid, Isaac flared and was hospitalized due to a bout of C-diff. At that point, a team of GI doctors suggested a lower level medication combo of Balsalazide Disodium and Methotrexate and we complied.   After researching treatment alternatives with the hope of avoiding harsher medications, we decided to give the Specific Carbohydrate Diet a try. Isaac was in favor of the new venture and we started it on Memorial Weekend 2012.

Most of 2012 we felt like it was two steps forward, one step back. We experimented with new recipes and the new way of eating, making lots of mistakes along the way. Isaac’s health improved and became more stable, which encouraged us to continue on the SCD path. After about four months on the diet and a routine visit with the GI doc, he called us at home to tell us that Isaac’s calprotectin level was normal, completely normal. He had pediatric patients who had been in remission for years that never achieved a perfectly normal calprotectin level and he was amazed by our success. Of course, we gave credit to the diet while our doctor credited the medications. Regardless, we were thankful for the good health and our doctor’s willingness to let us continue on SCD. Throughout 2012, 2013, and early 2014, Isaac grew several inches, gained weight, and was thriving with only slight setbacks due to viruses.   Each GI appointment was the same……we occasionally brought up the diet and our GI doc would tell us that he had thought of us after reading some success stories about SCD from the Seattle Children’s Hospital and various case studies. He was also interested in the studies supporting EEN as treatment, not only due to its success but because of the implications it had on the role of nutrition. We have a mutually respectful patient doctor relationship but we continue to try to get him to fully accept diet and nutrition as an alternative treatment and he continues to push medication.

2014 consisted of some ups and downs for us. Isaac had two major flares, one due to a staph infection in his GI tract and the other we aren’t sure of the cause but it landed us in the hospital for a few days. After a colonoscopy revealed mild active disease, the GI Doc who performed the scope said he would be remiss if he didn’t encourage us to continue on the course we were on. Isaac had achieved remission before and we had great success for two years.

Today, Isaac continues to do well. On the outside, he looks and acts just like an active 16 year old. He is on the SCD and continues his lower level medication combination. We’ve had a setback this year but he came through it like a champ with diet alone. We once viewed this diet as a cure-all but as we walk this journey, we have been humbled by the unpredictability of the Crohn’s beast. We have learned to tweak some things in his diet, we have learned more about his stressors, we become increasingly educated about the disease.   Our family takes things one day at a time. We persevere and have patience in the difficult times; and we give praise and celebrate as often as we can!