Tracy and Charlene Widner
In July of 2009 at the age of 9 our son Dalton was diagnosed with Ulcerative Colitis. We were familiar with the term autoimmune because my Mom had passed away from an extremely rare autoimmune disease called Wegenerís 6 months earlier.
Daltonís symptoms started on a Saturday evening with bloody diarrhea. He had not complained of any other symptoms prior to that night. We were totally stunned and quite worried even though we tried not to show it. We immediately called our Pediatrician at Black and Benton. Dr. Joe Black was on call that night. We explained the symptoms and he told us if Dalton got any worse to call him back and head to the emergency room; otherwise he wanted to see us on Monday. The rest of the weekend went by with the bleeding subsiding. On Monday we saw Dr. Joe, we explained that his bleeding had eased off. He examined Dalton and told us that he wanted us to go see a Gastroenterologist at Childrenís Hospital and that he would make a call. Dr. Joe immediately called Dr. Al-Tawil and told him about Dalton. We had an appointment the very next day.
By Tuesday afternoon Daltonís symptoms had completely stopped so we told Dr. Al-Tawil and his nurse that we were wasting their time. They said we were most definitely were not wasting their time and that they wanted to scope Dalton. We had the choice of putting Dalton in-patient and having the prep done there or taking him home to prep on Wednesday for a scope on Thursday. We opted for the home prep because at this point we still had no idea that anything could possibly be as serious as it was.
Thursday came and of course Dalton was starving and having never went without a meal before much less fasting he was not exactly elated to be going thru all this. We promised him that after the procedure was over we would take him straight to a restaurant to eat. Little did we know that it wouldnít work out that way. We were sitting in the waiting room anxiously waiting for Dr. Al-Tawil to come talk to us and we watched him several times pop in and out of the waiting room talking to parents and then leaving again. Then he came looking for us and instead of giving us a brief talk like he had all the other parents, he pulled us into a conference room. Well that is never a good sign but we still had no idea how our world was about to change. He tells us that Dalton is a very sick little boy. He explains that the scope has shown that Dalton has an autoimmune disease called Ulcerative Colitis or UC. Our minds immediately go to the passing of my Mom and we tell him about her disease. He explains that all autoimmune diseases are somewhat cousins of each other. Dr. Al-Tawil explains that he has to admit Dalton to the hospital for complete gut rest and medicine for at least a week. After a short while we meet Dalton down in his room. He is very sleepy still from the procedure but manages to ask when we were going home and that he was hungry. Choking back tears and trying to act calm we explain that he wonít be going home today. When he was able to sleep off the anesthetic we talked told him as much as we could about what was happening to him. He was understandably scared, confused and shed a few tears but he is one brave little boy. Over the next 6 days we learned more about the disease and how to care for Dalton at home, while he was given a regiment of steroids, antibiotics and Mesalamine intravenously.
We were able to control his disease with an oral version of Mesalamine until Christmas of 2010. At a check-up visit in December the levels that are monitored to detect a flare-up were starting to rise in Daltonís blood work results. We started on an oral regiment of antibiotics in addition to his normal medication to try and combat the progression of the flare-up. His symptoms started to increase slowly thru New Years so the medication was adjusted. After about 7 days with the adjusted medication, his symptoms eased off and we thought we had been successful. That was until on a Friday morning in early January Dalton woke up to severe vomiting that was very dark in color. This was nothing like what we had experienced in 2009 so we were not sure that it was UC related since Dalton had been fighting sinus drainage for about a week. We took him to see Dr. Joe first thing that morning. On the way Dalton started experiencing severe abdominal pain. Dr. Joe briefly examined him and said to take him to Childrenís emergency room immediately and that he would call and notify them we were coming. The emergency room doctors examined him to see if it might be his Gal bladder or Appendix, gave him medication for the vomiting and performed a couple of tests to rule out anything else but his UC. They then called Dr. Al-Tawilís office and before the ER doctor could return to tell us what was discussed Dr. Al-Tawil was walking in the door. He explained that this was Daltonís flare-up and that he was admitting him again. Dalton was sicker than we ever imagined. This episode was nothing like the first and we knew then that we actually knew nothing about this disease. Dalton was in the hospital for another 6 days. He had to have a drainage tube put in to pull the bile from his stomach and had to be taken upstairs where they put him to sleep to insert a pic-line IV. Dr. Al-Tawil also monitored his blood count closely because he was very near the level of needing a blood transfusion. The Mesalamine was no longer keeping his disease in check; we now needed to suppress his immune system to control flare-ups. Dalton is now on an IV regiment of Remicade every 8 weeks. Because of Godís Grace and the wonderful care from our Doctors and Nurses, Dalton has been symptom free since January 2011.