Sunday, November 18, 2012

Monkey's Diagnosis Stories

Yes you read the title right!  Stories is not a typo.  She has 2 of them.  

Our daughter was sick from about 9 months on. She suffered from horrible GI symptoms and vomited so frequently over the years that she damaged her esophageal sphincter and now takes medication for reflux. (A good week was only 3-4 times). I had her tested multiple times for Celiac over the years but the blood work always came back negative.  My husband is Celiac so I was sure this is what it was but when the bloodwork kept coming back fine I started to second guess my instincts. We went to our local ER countless times only to be told I was being an over excited mom & that my monkey only had the stomach flu.  Finally in kindergarten her symptoms couldn't be ignored anymore.  I could time how long it would be after she ate before she would be running to the bathroom with diarrhea & screaming for a bucket so she could vomit at the same time. They repeated the celiac panel again & finally we got a positive test result. In Canada you need a protein count of 7 to be diagnosed, hers was well over 21,000. I was devasted but knew we could do it. It took over 2 months before they were able to do her endoscopy & biopsy. When her Peds GI came into see us in recovery after the procedure she informed us that she had never seen so much damage in such a little person. Gluten free started & what a difference it made!!!!  All of a sudden my little girl was growing & thriving. She went from the 15th percentile on the growth charts to the 50th in 3 months!!  It was fantastic!  She finally was able to sleep through the night without having nightmares.

Then grade 3 happened.  We had noticed that Monkey was having trouble focusing in school & just didn't seem herself. At the beginning of December my husband slipped & broke his ankle & ended up having emergency surgery to have a plate & pins put in. He was taken by ambulance to the nearest major centre 3 hours away. We followed & stayed with his parents while he was in the hospital. Monkey wet the bed 2ce in 4 days but we all figured it was just stress. After we came home things didn't get much better. She was hard to get out of bed for school, she started sleeping in on the weekends (totally out of character). In January her & I flew to San Diego with friends for a work conference. While we were there she was really out of sorts. Her tummy hurt ALL the time. She vomitted a couple times and kept complaining that her legs were sore & she was too tired to walk. I figured she had been glutenized and left it at that. When we came home I noticed she was drinking quite a bit but figured it was just the difference in climate. (It's quite dry in the mountains where we live.) her skin was really dry & she was constipated. I thought that was odd since she had always fell on the other end of the spectrum. I encouraged her to drink more water at school.  I noticed her jeans were all getting too big in the waist but thought she was just getting taller again.  3 weeks after we came home from San Diego she went X-country skiing with her class.  She came home from school & wet her pants walking up the driveway from the bus. She laid herself down for a nap & turned down dinner. The next morning she got up, ate 1/2 piece of toast & went back to bed. She slept on & off all day & was running a fever. I just figured she had another bout of gastro. Sunday she was ok & she went to school Monday. I had to drive hubby into the city to see his orthopedic surgeon that day so monkey was staying at my mom's house. Gramma had to pick her up from school because she almost fainted on the playground during lunch recess. She napped & then seemed ok. That night while we were in the city I was talking with hubby's mom telling her all this & thinking to myself I needed to get her blood sugar checked just in case.  Wednesday morning she was an absolute BEAR to get going & even hubby commented that something was wrong. I spent all day trying to get her into the clinic to be seen but kept being told to bring her to walkin after school.  As soon as she got home I took her down. We waited about 45 min before being seen.  The resident we seen took a urine sample & weighed her. When I seen her weight but heart dropped. She had lost 6.5 lbs in 3 weeks!!  When he came back with her results he said there was glucose & ketones in her urine & that we had to go to emerg for more tests. I knew what it was as soon as he said ketones. We stopped at home to grab her dolly & tell hubby what was happening. When we got to emerg they were expecting us. They checked her BG & it just said HIGH.  That confirmed it. My baby has Type 1. When they did the lab work it confirmed a BG of 39.9 mmol/L (718). They told me that she was just starting to go into DKA. What followed after that was just a blur. We spent 6 days in Edmonton staying with the in laws getting training. It was all done through out patient at Stollery Children's since she wasn't considered critical. That was Feb 8 of this year.

Her last A1C was 8.4 and we are now starting the process of getting her on pump therapy. It will likely be Feb 2013 before she will be able to start.

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