Health Hits Home for One Kidzeum Family
August 2, 2011 3:11 PM | Tagged as Board Member, celiac disease, Family, Gluten-Free Diet, Kidzeum, McLaughlin, Support
You never know what the future holds when it comes to your children’s health. Joey McLaughlin, a Kidzeum Board Member, and his wife, Michelle, faced a scary period of time with their son, Jack, when he was nearly two years old. Jack suddenly had developed spots on his tongue (a sign, they found out later, that he was suffering from malnourishment) and he started having major digestive problems. When he wouldn't get better, Jack's parents took him to the doctor. But after about a month of trying to diagnose Jack, his parents were beginning to worry that he might have cancer.
When Jack and his parents went to the gastrointerologist, the doctor thought maybe Jack’s antibiotic from an earlier bout of pneumonia had wiped out the good bacteria in his stomach as well as the bad, causing the stomach issues. He suggested Jack be put on iv liquids which meant he could have nothing else to eat or drink during this time. This was done to try to let his gastrointestinal system rest and recover. He had a central line IV put in to give him the fluids with a pump housed in a backpack. Jack's parents had to change his nutrient pack several times a day and we had to learn how to flush out the line. It hurt Joey and Michelle to see him lying there, and having to forego solid food for so long.
The gastrointeologist had also taken some other tests while Jack was in the office. Among those was a blood test for celiac disease. Two days into the fluids, a call came into the gastroinerologist saying Jack’s blood test for celiac came back positive. What did this mean? The next step would be to get a biopsy of his intestines, the only way to confirm if he really did have celiac disease.
Celiac disease causes a person to be intolerant to gluten. Gluten is found in wheat, barley, rye and sometimes oats (via cross contamination). The doctor described it to us this way...gluten acts as sandpaper and causes the villi in your intestines to be sanded down to nothing. Without the villi, you lose the ability to absorb nutrients. If left untreated, the Celiac Disease Foundation says it can lead to damage of the small bowel that can be chronic and life threatening, causing an increased risk of associated disorders – both nutritional and immune related.
After finding out Jack had celiac disease, the family didn't know where to turn for help in understanding which foods were appropriate and which foods could cause Jack to spiral into another lapse if he ingested wheat. Finally, the family found some information from the University of Chicago after many, many hours of endless research and sleepless nights. And what they found was helpful, but they wished they could have had more local resources to help them break down the very strict parameters of a gluten free diet.
A gluten free (GF) diet means NO wheat, barley, rye and sometimes oats. Wheat is in more than just bread and cookies. Wheat can be found in seasonings, medicines, cereals, as coating for some foods, etc. Jack's parents had to learn to read labels and what to look for to ensure there was absolutely no wheat. The research pointed Jack's parents to discovering gluten free products for things like bread, cookies, etc. so that Jack's life could be as normal as possible. They didn’t want Jack to go to a birthday party and not be able to have cake and pizza like the rest of the kids, so they began making their own gluten free cake and pizza to take with him.
After the family found out more about the disease, they realized that Jack's sister Sarah also experienced some of the symptoms, and upon having her tested, Sarah was diagnosed with celiac disease as well. Sarah's diagnosis was another reason that resources about celiac disease is so vital to the health of families...to be able to spot and recognize symptoms and learn to preemptively act before a scary situation occurs.
Because there wasn't somewhere locally to understand celiac disease, Jack's parents had to endure undue stress to take the time to research for information. But, Joey is actually a Kidzeum of Health and Science Board Member. And for that reason, within the Healthy Body Gallery, Kidzeum is determined to help other families, like Jack's, to learn more about celiac disease and provide them with resources to help manage their diet. Kidzeum will also offer other visitors, who may not realize what a gluten free diet entails, to understand the disease and to become empathetic to those who have been diagnosed.
Kidzeum will not be just an entertainment facility with the best interactive engagements to provide fun for children. Kidzeum will serve a very vital purpose by offering educational outreach, learning opportunities, and socialization to help understand differences, whether it be celiac disease, visual impairment, or utilizing a prosthetic. Kidzeum is a community-oriented place where children and their families will discover ways together to help live healthier, happier lives, just like Jack and Sarah.
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