When your child wakes up in the middle of the night or misses school because their stomach hurts, it may be a more serious issue than just normal stomach pain. There have been a significant increase in the number of pediatric patients diagnosed with Inflammatory Bowel Disease (IBD). “IBD is chronic inflammation of the GI tract, that involves three categories,” explained Dr. Youhanna Al-Tawil, Medical Director, GI for Kids, PLLC. The three categories are Ulcerative Colitis where the lining of the colon gets involved, Crohn’s Disease where the wall of the intestines could be involved, and then it can include both Crohn’s Disease and Ulcerative Colitis.
“I came from Syria and was also sick as a child and almost died from it, I wanted to do something for the children, I could not do it in Syria, so I am here; my children were born here so this is home,” shared Dr. Al-Tawil. In 2008, Dr. Al-Tawil started the non-profit organization KidsFACT (Kids Fighting Against Crohn’s and Colitis Together) to help children and their families cope with IBD with a support system and also promote research and education on the issue. KidsFACT is sponsored by the organization GI for Kids, PLLC located at 2100 Clinch Avenue in the Children’s Hospital Medical Office Building. The group consists of moms, dads, patients, friends, or other family members in the community that wants to be supportive during this overwhelming experience.
“This is an autoimmune process, meaning your body turns against itself,” said Dr. Al-Tawil. The peak age is around 10 to 20 years old, but it can be found in all ages. Unfortunately, it is not known what causes this problem, but there are several theories. One theory is that there is a trigger that causes the problem to flare up. Also, a person’s diet could cause issues or infections. IBD is also found more commonly in developed countries than developing countries because of the significant use of processed foods and the strength of the immune system. “In developing countries, their bodies are constantly fighting off diseases, in the developed countries the environment is different so the body begins attacking itself,” explained Dr. Al-Tawil. The other issue is that the floor of the intestines is supposed to break down food, but with the excessive amount of processed foods, it does not work properly because there is a lack of certain vitamins and nutrients. There is no cure, just treatments to help decrease the inflammation and maintain remission. Stress and anxiety can also cause a serious problem.
“It’s fine to talk about heart disease and cancer, but no one wants to talk about their bowel movement, bleeding stool, or vomiting,” shared Dr. Al-Tawil, “but I promise you there are many people that suffer from this and people die from it. I am trying to increase awareness that these kids exist, because people don’t want to talk about it. We have more than 500 children in this office alone that actively have this disease.” Their cases are so extreme many of the kids cannot exercise, they’re going through multiple surgeries, they’re fatigued, confused, and on several medications. This disease not only affects the patients physically, but affects them emotionally, financially, and socially.
“A lot of these families cannot afford these medications and insurances. The healthcare system tells you what medicine you can take and what medicine you can’t. One medication alone can be around $1,000 a month and some kids are on 15 medications,” said Dr. Al-Tawil. “I see these families break down, children, mother, and father and six months later they’re divorced because of stress of finances, stress with dealing with this condition, multiple visits, and stress at school.” For the children, school is stressful because there is unawareness at school with teachers and friends. Most children have to leave class every 20 minutes to go to the bathroom and get behind in class and end up having to do homeschooling.
These children go through so much and no one is aware of it. “Children rebound fast, they are like flowers, they are so sick but if you take care of them, they come back so beautiful. Every day I tear up, two weeks before they are almost dying and then they come in asking about you, hugging you, they are like my children,” shared Dr. Al-Tawil. “Just today, a little boy that was almost dying told me that since he made it, one day he is going to open up a church, you know children talk like this. Every day I am happy.”
The organization has psychologists, nutritionists, and several people letting these families know that they can make it; there is a lot of support and the organization does not mind educating people on these issues. “We also have a researcher that monitors the children and monitors them the rest of their life to see how they do and also the researcher does drug studies to figure out what test and medications are working better than others. We are always trying to find new ways to improve,” stated Dr. Al-Tawil.
On May 3rd, KidsFact and GI for Kids, PLLC will sponsor “When is a Belly Ache Not Just a Belly Ache?” 7:00-8:00 p.m. at East Tennessee Children’s Hospital Meschendorf Conference Room presented by Dr. Al-Tawil. It will be a discussion on how some children that have belly pain need to be taken to a healthcare physician. “I will explain how when stomach pain is really important to come to the doctor. I agree, sometimes it may just be school phobia or something they eat. But I want to discuss the red flags.”
Some red flags are fever, progressive weight loss, diarrhea, pain that wakes up a child in the middle of the night, rashes, loss of appetite, vomiting, and constant pain in the abdominal area. Parents can go online to the GI for Kids, PLLC website to learn more information. “It is the most visited website in the world for children gastroenterology; we get more than 2 to 3,000 hits a day; we are a very busy practice here and have a good reputation,” explained Dr. Al-Tawil. About 40% of the patients are not from Tennessee. Patients come from Kentucky, Alabama, and Virginia and drive hours to go to this particular practice. Dr. Al-Tawil also has a newsletter with submissions from other doctors and parents discussing their experiences, knowledge, and thoughts regarding IBD and other medical entries.
GI for Kids, PLLC also has other programs called Celi-Act for those suffering with Celiac Disease and Bee Fit 4 Kids, an athletic program for the kids. The organization had the biggest vendor fair for Celiac Disease in North America with about 1,800 people and vendors in attendance. The organization also comes together to have rodeos or family festivals with games for the kids to try and get them active. “I like to sponsor the kids to do a summer project, whether it is racing or golf tournaments, these kids deserve it and no one thinks about them,” said Dr. Al-Tawil. One of his patients has a beautiful singing voice, “I will sponsor her, so she can make a song about being a teenager with this and dealing with school and overcoming to do well in life. We want to give them something to do so they can achieve in their life.” In the future, the group hopes to start giving college scholarships! “Every patient is different, it is a team approach here,” shared Dr. Al-Tawil.
“The mothers volunteer and help. they go above and beyond because you are there for them when their child is sick,” said Dr. Al-Tawil. “I have a passion for this, I love it, it’s in my blood. Everyone has a mission in life. One day when I meet my Creator, I want to know that I came to this Earth and did something for the children, I worked hard and I am happiest when these children come back healthy.”
For more information about KidsFact, please visit www.kidsfact.org or www.giforkids.com.