Katelyn 
Katelyn's Story
My daughter Katelyn is just the sweetest, smartest little girl ever. She has Ulcerative Colitis. She was diagnosed at 20 months, after having been sick nearly her entire life. She is currently 32 months old and is experiencing a flare-up. We're hopeful we can get her back on track. I share her story in hopes of helping other parents of very young children who are going through what we've been through. 
At about 2 weeks of age, she started screaming hours and hours daily and she obviously was in pain. Of course we were told it was colic. She was nursing well and growing well.
At 12 weeks of age, she had RSV and was on prednisone for a few weeks. Her "colic" improved during that time. We now know that the prednisone was helping her GI issues but at the time we didn't connect it.
At 4 months of age she started having blood and mucous in her stools and the pain had returned. We were told that it could be a food sensitivity to something in my breast milk, but that as long as she was gaining weight and growing that there wasn't anything we needed to do.
At 6 months of age, she weighed 20.5 pounds. She was a chunker and growing well, so the doctors still weren't concerned about her odd stools.
At 9.5 months of age, I realized that she was losing weight. I'd initially thought she was just trimming down because she'd started sitting up and scooting around. I'd been told by our former pediatrician that she was "overweight" and to limit her feedings. Although I refused to limit her feedings, I was not alarmed when she began to trim down/tone up. I figured it was a normal progression since she was more active. She's my third child. Everything seemed fine. She was still eating well and was eating a lot of table foods as well. But one morning I looked at her and it hit me that something was wrong. I called the office where we had an appointment with a new pediatrician (we'd moved out of state since her 6mo appointment) and asked them to see her earlier.
The new pediatrician said she was in danger of being classified as "failure to thrive." She was 17 pounds, which would have been fine if she hadn't been over 20 pounds earlier! She hadn't grown in length since her 4 month check up. He also decided she was hypotonia (low muscle tone) and that she had a GDD (global developmental delay). We were instructed to switch her to formula from breast milk so we could regulate what she took in. He ordered dozens of tests and tested her for bacterial infections, parasites, etc.
She refused any and all formulas, so he had us start supplementing her with cow's milk. A month later, she was down to 15.5 pounds. We were referred to an OT, GI, NS and every time we saw a new doctor, this usually meant more tests, more lab work...and more misery for Katelyn.
When we finally got an appointment with the pedi. GI when she was almost 11 months, she was down to 14.5 pounds. The GI worked with a nutritionist and they both made getting her to gain weight their primary concern. Butter, cream, oil and chocolate were added to almost every meal and every bottle of milk. Blood work was negative for celiac but we were told she'd need a biopsy to confirm that. The GI felt we should wait until she was 18 months to have the colonoscopy she'd need. He really felt it was Celiac. He mentioned IBD but said she really was too young to have it.
The NS and OT tried to figure out reasons for her hypotonia. We were told at one time that she probably had CMD. A blood test for that came back negative - after we had to wait a week for the results. The NS wanted to put her under and do an MRI, which we declined. It didn't seem like the right thing to do...none of the conditions the doctor wanted to rule out would have been affecting her GI tract, which I *knew* was her main issue.
She was also found to have a sensory disorder and they said she had a social disorder. I did not believe either of those diagnoses - she just was so sick of medical appointments and blood tests and medical personnel that she acted completely different when with them than she did when we were at home!
Finally, at about 12 months of age, she began to improve. She started to gain weight and started to crawl. Her pedi. and I decided to hold off on further testing. We had a GI follow-up and since she was gaining weight, he said we should continue to wait till she was bigger for the colonoscopy. She was anemic so she went on iron for a couple months.
By 14 months, she stopped having bloody diarrhea all the time. At the time we did not know it, but she was in a remission. She actually started having formed stools for the first time ever! Her hair started to grow and she started walking at 15 months. She started talking and broke 20 pounds again! She was happy and seemed like a normal child for the first time ever. We canceled our follow-ups with the GI, OT and NS and thought everything was behind us. The only issue was she wasn't getting taller. We were told she might have a rare but mild type of dwarfism because she has a somewhat prominent forehead and a slight spinal curvature. We weren't worried--if that was an issue at least it would be mild. We were told we should take her to a skeletal specialist between 2-4 years of age.
Then, at 18 months, she got sick again. She suddenly started having acidic, watery, mucous, bloody diarrhea. When trying to get in with her GI we found out he'd moved. We got on waiting lists for every pediatric GI in AZ, figuring we'd go where ever she could get in first. While we were waiting, we tried homeopathy at the recommendation of the PA at our regular pedi's office. We tried probiotics. We tried eliminating dairy. We continued seeing the pedi. every week. We tried everything and nothing worked.
When we finally were able to get into a GI, Katie was down to 18 pounds, pale and weak. She was sleeping most of the day and refusing to eat. The GI suspected IBD right away and scheduled a colonoscopy/upper endoscopy for five weeks later. She also ordered a complete blood panel including the IBD panel.
When the results came back, he hemoglobin was dangerously low at 6.2. The GI on call prescribed iron and after I described how lethargic she'd become, he moved some mountains to fit her into his schedule the following week. Someone in the GI department dropped the ball, though, and failed to call us back and tell us! It was a Friday afternoon and they needed to call us and tell us to start the clean-out process over the weekend to prepare her for her Wednesday appt. for the procedure.
On Monday, we were told she'd need to be admitted for the clean-out and that her procedure would no longer be outpatient. There were also greater risks due to the anemia, which was worse. She was close to getting an iron infusion (very dangerous) or transfusion. But we had no choice but to move forward.
She went in to the hospital, got an IV and NG tube and spent 24 hours having a special solution pumped through her and not being allowed to eat or drink (she was not happy!). She needed her diaper changed every 15 minutes throughout the process and was just so incredibly miserable and sad. My husband and I were at the hospital, one of us stayed by her side at all times but we had our 9 week old with us. It was not a private room and we had the small half--it was a the size of a closet. There wasn't even room for a recliner or pull-out. Katie's roommate's teenage sister blasted the TV at all hours and wouldn't turn it down or off. It was awful.
At midnight I had to leave and go to a hotel with the baby. I was so afraid I was going to fall asleep in the chair and drop him. My mom brought our older two kids down and we all slept at the hotel, had breakfast and went back to the hospital in the AM to prepare for the procedure.
My husband stayed up all night taking care of Katie. He didn't like her night nurse and didn't trust her--he said she smelled like marijuana, her pupils were dilated and she had the "pot-head" laugh! I thought it was funny that he was so protective of Katie! And I did also have a funny feeling about that nurse, but I was so tired I wasn't sure what to do about it. He didn't let her touch Katie that night without making her explain what she was doing...and when the solution they were pumping through had reached the # of milliliters she'd needed, he tracked down the nurse and hounded her until she removed the NG tube. Daddy really bonded with Katie that night.
The morning of the procedure is a blur. The things that stand out to me are that we didn't even meet the new GI till moments before. We'd been told since we checked in the previous morning that he would come by and talk to us, but he never did. We met him in pre-op and I liked him OK. He tried to console me when I started sobbing, which was after he read off all the risks and told us how sick she was due to the anemia. He was a little cocky and told us how he'd only perforated two intestines in his whole career. That was supposed to make me feel better...but it didn't!
They allowed my husband and I to go into the OR suite with her and stay till she was asleep. I chose gas over IV, even though they were leaning toward IV because she did already have a line in. The gas seemed safer to me. She was already sleeping (napping...she was just so worn out) when they put the mask over her face but she woke up and fought and fought. My husband and I talked to her and touched her until she went limp. It seemed like forever but it was less than a minute. The anesthesiologist then said, "Give her a kiss, mom" and I did and then we had to leave. I was practically hysterical (with fear) and dh just sort of led me out to the waiting room. I don't remember the walk because I had my face buried in his arm.
I managed to compose myself in the waiting room and was pleasantly surprised when they came and got us 40 minutes later instead of an hour or more like they'd said. She'd been taken to recovery and was stirring. She ended up sleeping another two hours but I was glad we got to stay with her. She never did experience any of the things they warned us of while coming out of the anesthesia. She just slowly woke up and acted a little clumsy for a few hours. We were allowed to start giving her liquids and then food. We were discharged later that afternoon after she'd eaten and kept down a bunch of food! She was so happy to be eating!
The GI doc showed us pictures he'd taken of her intestines and esophagus and stomach. He strongly suspected Ulcerative Colitis because her upper GI tract was clear. He had not been able to enter the small intestine but the uppermost segment of her colon was mostly clear - yet the rest had moderate to severe ulceration and inflammation. The biopsy results confirmed what he thought-IBD/UC.
She started prednisone, increased her iron and started colazol. There was no way to get the colazol in her, so it was switched to Pentasa. She started to get better, but relapsed during the prednisone weaning and had to start over and be weaned more slowly. Three weeks later she was in full remission and her iron had improved greatly. We had to continue iron for two more months. Our regular pediatrician allowed us to stop the iron earlier than the GI would have - it was unclear what the GI wanted as far as which doc was going to follow her anemia and there were some communication issues between the two doctors but it worked out fine in the end.
She started doing so well and made it up to 28 pounds by the time she was 2.5 years old. In 9 months she gained 8 pounds, grew three inches, her hair grew (after having stayed fine and short like baby hair) and she completely took off cognitively and with speech.
She did well for about 6 months and then started having "breakthrough" episodes where it was like a flare-up would threaten us for a day or two but then go away for a couple weeks. After about 2 months of these occasional breakthroughs, I told the GI we needed to nip this. He decided to play it very conservatively and increased her Pentasa. When that didn't help we added Canasa. When that didn't help, he prescribed prednisone, but half the dose she'd had 10 months ago when she weighed 8 pounds less. We just got him to increase the prednisone back to the higher dose and we're praying this works. Hopefully I will be able to update that it did. :)
UPDATE - 9/07/07
Katelyn is very ill. She took longer to respond to prednisone than we'd hoped and right when she started improving significantly, she and I got food poisoning. That has been a huge set-back. It's been two weeks since she got sick from that and she hasn't bounced back. We took her to a new GI in hopes that he would be able to help us. He ordered all new labs and some tests she hasn't had yet. We're hopeful he'll have some answers. Hospitalization is something we may need to go to if we can't turn things around soon. The good news is that her hemoglobin is not dangerously low like I'd begun to fear and her ESR and CRP are the same as they were early on in this flare-up.
The next week we will just be taking care of her and waiting for the remaining labs to come back--then we'll know what comes next. I think it will be Imuran but since it does not work immediately, we have to decide what to do in the present. She's in a lot of pain, is miserable and nothing makes it better.
I just rediscovered the SCD and I'm getting ready to try that. When I first read about it a year or so ago I wasn't too impressed but at the time she was responding to her meds and I thought everything was going to be okay. I have a completely different perspective now!