Belle's Story

Seeing as I'm always talking about Belle I thought I would give you her story so far and how this journey began.....

Even while pregnant with Belle she was trouble ;-) I fell and broke my ankle at 29 weeks and at 35 weeks Belle decided to grace us with her presence. She was born November 24, 2006 at 6lbs 4 oz and 19.5 inches. She came out screaming and all the doc's were impressed that she didn't need to go to the NICU. SHe stayed in room with me and went home 3 days later.

Belle was a colicy baby but was growing and doing well with feedings. Her eczama did start to develop and it covered her when she was a few months old. We were told she might be allergic to milk if it didn't clear up with cream. Well it cleared up and so that reason was tossed out the window. The year continued and she began eating solids and enjoying food. At 1 year I began to introduce cow's milk to her. She was given whole milk soon after her first birthday. that is when the journey began. At 13 months I had Belle at the doctors office almost weekly. She was having upwards of 14 dirty diapers a day. Not small ones but full dirty diapers. They tested her for milk allergy with a blood test and it came back normal so she must be ok. But she kept getting worse. By 14months she looked horrible. Eyes sunken in. Didn't want to eat and all over tired. It all came to a head when one morning in January of 2008 Belle got down from her high chair and began to scream in pain. I couldn't take doctors excuses anymore so I called to see a ped that morning. The ped told me I was being an overprotective mommy and it was just toddler diareah. I insited on getting a referal to a GI doc and the scheduler in the office was able to get her one that afternoon. We got to children's and were put in a room to wait. Her doctor came in and took one look at her and said to take her immediately to the ER. So off to the ER we went. Belle was severely dehydrated and the attempt to get in IV in her little body was a hard process. By midnight that night we were told they could either admit her for observation or she could go home because she had started to get rehydrated. I insisted on them admitting her and so our 2 week stay began. The following day Belle became dehydrated on IV fluids. That sent up a red flag to everyone. for the first few days she was tested for all sorts of GI bugs. She was quarenteened to her room. Finally when all that came back normal we had to do a scope, both upper and lower scopes. Her intestines were extremely inflamed at that point and there was a patch that was abnormal. But nothing conclusive. After 2 weeks we were sent home with the diagnosis that she had a milk and soy allergy and we needed to rescope in a few months. She was also sent home with an ng tube for 6 weeks and weight checks weekly.

Belle slowly started to get better and she was a real trooper when mommy had to change her ng tube weekly. By this point Derrick got to come home from deployment and help with the care of belle. We went back for her rescope and again there were abnormalities but nothing conclusive. So we began just living our everyday lives. She started acting like a normal kid again and we thought just the diet change was going to fix her. She started to have periods of time where the diareah would return and she wouldn't feel well but we'd just brush it off and chalk it up to maybe she got some cross contamination. Her doctor said she was growing great and she just might have periods of time when her intestines would just flare. But he wanted the next time she was having a major flare up to return.

Fast forward to this year. Belle started complaining almost daily of her tummy hurting. She was going to the bathroom 4-5 times a day just to poop. At first I thought maybe a tummy bug....then maybe she's just having a small episode. But 2 weeks turned into a month a month turned into 2 and I called her GI doc. Had to wait another month just to be seen bc of his schedule. When we finally got in he decided it was time for another scope. We were all ready for it and the night before belle spiked a fever and started vomiting so we had to reschedule for the following week. The plus was that we got to reschedule it for the closer out patient clinic near us.

She went in for her scope and did great. Well except coming out. She was a screaming monster. She does not do well coming off of anistesia. The doc came out to talk to us (not her normal doc) and told us everything "looked normal" and maybe these episodes were just her "normal". Honestly I wanted to scream at her that diareah is NOT "normal" for ANYONE. But I held my tounge.

We recieved the results a few weeks later. Her GI doc told us that her enzyme results came back abnormal. She has what is called congenital sucrase-isomaltase deficiency (CSID). We had to remove all sugar from her diet and give her an extremely expensive enzyme suppliment. The hunt for food has been extremely difficult but we are surviving. She's been a super trooper through all of this. So our journey continues and hopefully we'll be able to give her some sugar in the near future. Just how much we're not sure....