A Diagnosis

For those of you who already got this email, sorry for the repeat:


This week Nora was diagnosed with Crohn's disease, an autoimmune disease that affects the gastrointestinal tract. It is extremely rare in infants and we owe a lot to our wonderful pediatric GI, Dr. Pickens for being stubborn enough to figure out what was going on with our poor little baby. Yesterday Tom and I met with Dr. Pickens and a nutritionist to talk about treatment options, which unfortunately are limited with Nora being so small and so young. It is very different then treating an adult patient or even an older child. Some doctors (Nora's included) believe that Crohn's starting in infancy is actually a separate pathogenic subgroup of the disease, one that unfortunately is still a big mystery in many ways. But the good thing is that research is being done and doctors are finding out more and more each year.

According to Nora's tests (endoscopy, upper GI and colonoscopy), the disease is, at this point, affecting her esophagus, duodenum and ileum (in the small intestine), and in every part of her colon that they took biopsies in. It is extremely painful for her, and it is making her anemic and deficient in various vitamins and minerals and stunting her growth due to the villi in her small intestine being unable to do its job (absorb nutrients) because of the inflammation. However, even among the painful disease and procedures and tests over the last 6 weeks Nora has for the most part stayed a cheerful, smiley, happy baby. She is a fighter in every sense of the word.

This week Nora started on prednisone, a steroid that will suppress her immune system and calm the inflammation. Because of the severe side effects of steroids Nora can only be on it for 4-8 weeks, at which point she will move on to an immunosuppresant called Imuran, which is one of two drugs that comes in a dose small enough for Nora. It has some scary side effects, but we will be staying up on them with weekly blood tests for the first few months, then every three months after we get her up to the right dose and feel good about how it is effecting her body and working on the disease. For the next few months we will have to be very careful in doing everything we can to make sure Nora doesn't get sick - because her immune system is suppressed she will get sick very easily, and because of her disease any diarrhea or vomiting or fever can be very dangerous for her. We love you all, but if you are sick STAY AWAY!!! :-)

We are so fortunate to live where we do and have two amazing children's hospitals withing 40 miles of our house. Dr. Pickens also used to work with the leading inflammatory bowel disease expert on the west coast (Dr. Heimlen in San Francisco), and he has already consulted on Nora's case. We are also blessed to live among so much family and such wonderful friends who have overwhelmed us with their love and support. Thank you!