PCRCD - Pediatric Center of Rare and Complex Disease

Except for food allergies and eczema, our youngest child, Adam, was a bright, healthy baby and a joy to us all. Shortly after 15 months, however, he developed chronic diarrhea and recurrent ear infections. No one suspected that these medical issues might be contributing to the developmental regression that soon followed. We were told that his only chance for improvement lay in education, speech therapy, and occupational therapy. We pursued this course with intensity, only to watch Adam inexorably fall further and further behind his peers over the following three years. Adam was 4 1/2 before I became certain that his medical problems were impacting his developmental issues and were not merely 'coincidental.' Seeking help, we began a journey that would take us far and wide to Minnesota, Florida, Maryland, Illinois, California, Nebraska, Ohio, New York, New Jersey and to several physicians in our home state, Michigan. All of the physicians we saw were competent and highly respected. Unfortunately, Adam's exact situation was not 'in the books.' Despite their careful evaluations and recommendations, his condition slowly progressed. Adam was simply 'too much' in many ways, and despite the eventual significant efforts of a few truly wonderful physicians, it became increasingly difficult to coordinate and implement his care. We needed someone who truly understood inflammation: the one feature common to his increasingly complex, multi-systemic problems. We were very fortunate to find that person in Dr. Harumi Jyonouchi at the UMDNJ. It is my understanding that Dr. Jyonouchi has many other young patients with medical issues similar to Adam's. As an immunologist with a special interest in neuro-inflammation, she has recommended a treatment plan that has finally helped Adam considerably. The gastrointestinal inflammation and intractable epilepsy that have plagued him for years are significantly improved under her care. I strongly believe we may have been able to fully mainstream Adam had we instituted these anti-inflammatory treatments several years ago. Now 11, he is not a young child, but I am extremely grateful that we have finally managed to stop his decline. Adam is better: more comfortable, more alert, happier, very cooperative, and a pleasure to have around -- at school and at home. Elisabeth Kubler-Ross wrote: "There are no mistakes, no coincidences. All events are blessings given to us to learn from." Despite his challenges, Adam is a true blessing to our family and all who know him. We have all learned so much from him. It is my dearest hope that this knowledge, through Dr. Jyonouchi and the PCRCD, may spare other families the more harrowing parts of this 'journey'. Deborah Darnley-Fisch, M.D.