Emi was diagnosed with Crohn's right before her 2nd birthday. A few months before then, she started falling to the ground and couldn't seem to walk. We couldn't figure out why since she couldn't really talk a lot and tell us what was happening with her, but she seemed like she was in pain. We thought she just wanted to be carried but that wasn't the case. We took her to her pediatrician and he said she had some type of paralyzes and we should take her to the emergency room right away. So, we did.
Next, at the hospital they probed and prodded her with a bunch of tests to figured out was wrong. She cried and cried but after a few days and after seeing multiple specialists, they didn't know what was wrong. My gut feeling was it had to do with her tummy and her bloody stools. She was in the hospital for over a week, couldn't eat anything and had a big IV and stand that followed her around. We pushed her around the hospital in a wheel chair. We were determined to get her home. About 7 days in she finally went to bathroom and they took her stool sample to get tested but it would take a few days for those results. Finally, after antibiotics, steroids and the IV she started moving her legs so we got to take her home still wondering what would be next. They told us she had high CBC levels and an infection.
About a week later we were at a party when she went to the bathroom and it was so bloody. I took a picture of it and sent it to her doctor and a few days later a GI specialist said let's do a colonoscopy and lets do it soon. So we did. The prep was so hard on her and we tried our best to get her to drink as much as we could, without her having food. She was so upset and we couldn't really explain it all to her.
The next day we went into the big white sterile procedure room. They tried to place the IV in her tiny hand multiple times since her veins were so little and it was hard to get one in. We met with a cardiologist who had to monitor her since she was being put under and the anesthesiologist too. It seemed more tramic for us then for her. She had no idea what was going on but she didn't like it. We went into the big room with her and they strapped her down and we said our short goodbyes. She was getting ready to be put to sleep and started crying out for us and said no Daddy, no which broke our hearts. She went limp and was out. We were escorted out of the room and after about an hour, which felt like forever, her doctor came in and said that 98% of her intestinal track was inflamed and showed lots of blood. He took some biopsies but said, it looks like Crohn's to me and we will know next week. I knew of the disease since a close friend of mine happened to be diagnosed with it after 9/1, just two years before Emi was born and suffered from it. I began to learn more.
When the tests came back we tried many options. Her doctor had never diagnosed a child so young so it was a learning experience for both of us. She was on steroids off and on. She tried a few medications until Sulfasalazine (an older medication that seemed to be working for her). Then, at that point we considered looking at many doctors out there since her being off and on steroids, and moody and puffy wasn't sitting with us. We heard about Dr. Dubinsky, who was world renowned, from other patients. I was determined to get Emi in at Cedars as her patient. After some calls, emails and exchanges, Doctor D decided to take Emi in at the Cedars Pediatric IBD Center. She got her off steroids and in a better place and she continued to do well with this process.
Now at the age of 12 and after five colonoscopies, Emi is in a good place. She exercises regularly, eats well and takes care of herself. She plays club soccer and runs track. After having chicken pox in 2014, she got off Imuran and has been growing ever since. We have had her flare ups under control but we always worry about her pain and when everyone around her gets sick. Just this week, she had another colonoscopy since her stools have been showing up with inflammation and she still gets her blood drawn every three months or so. Her doctor no, Dr. Singh, has been so great! Last year Emi even went to Camp Oasis and loved it and met some great friends who also suffer from the same disease. We are currently waiting on her results and what the next steps will be...So this is her story and as her parents, her Mom and I are determined to do what we can to find a cure for others and children like Emi who suffer in her lifetime.
So we are loud and proud and take steps each year to be heard!