Dylan's Story (Blessed Sacrament)
Dylan’s Journey Dylan McCully was born in July of 2013 healthy and happy. We were so excited to have our first baby boy. He was welcomed at home by his two sisters Isabelle and Maya. Things quickly changed when Dylan was three weeks old. He started having abdominal distension. I started noticing his stomach looked larger. My sister in law who is a labor and delivery nurse stopped by and agreed his belly didn’t look normal. I took Dylan to see his pediatrician and they ordered an x-ray. This is when we first noticed his abdominal distension. The pediatrician said to measure his stomach at home and keep an eye on him. His stomach continued to grow so I called the on-call doctor to discuss what I should do. They said to go to the ER. We went to the ER and we were triaged in quickly and admitted into the Children's hospital. We spent four nights at the hospital running all kinds of tests and trying to find the cause of the abdominal distension.
At the hospital surgeons were concerned if he had hirschsprung disease. He had a few symptoms; the narrowing of the colon and abdominal distension. They did a bedside biopsy and still thought he could have hirschsprung disease. However, the GI team thought he had a milk allergy. The hospital general floor physicians thought it was just who he was and that he wasn't fitting the medical textbook.
We were able to go home and follow up with our pediatrician. He referred us to Cincinnati children's hospital where they specialized in hirschsprung disease. We spent a year with CCH ruling out stuff. We learned on his first birthday that he did not have hirschsprung disease. They put him under anesthesia to perform a full rectal biopsy. Dylan had ganglion cells in his colon. Therefore he did not have hirschsprung disease.
We also partnered with the St. Francis Children’s Hospital here in Peoria to rule out the food allergy piece. We first got in with the GI department where he was diagnosed with severe milk allergy. They immediately put him on neocate formula. Then around 6 months old we were able to get in with an allergist at the hospital. He ran skin tests along with blood work. We learned Dylan was allergic to multiple foods and he was anaphylaxis to milk, egg, peanuts, and banana. Over the years we kept adding in more food allergies such as; avocados, oats, tree nuts and soy. We started to learn more about his immune system around 1 year old. Anaphylaxis is a life threatening allergic reaction. If you have anaphylaxis food allergies you are told to avoid those foods and carry an EpiPen.
Dylan continued to work with the GI department at St. Francis for 5 years. We continued to run tests and monitor him. He was put on neocate formula for his full nutrition for the day. He used neocate for the first 4 years of his life. It was enough nutrition for the day. He had an upper scope done to rule out EOE at age 3 because he was showing signs of EOE like coughing while eating and drinking lots of water when swallowing. So far things look normal in his esophagus . We were able to be discharged at age 5 from the GI department at St. Francis.
We partnered with the St. Francis dietitian department when we took Dylan off the neocate formula. We had to learn where he would get the bulk of his daily nutrition. They worked with us over the years to educate us on reading labels, dealing with not having dairy in the diet, and finding safe foods with such a limited diet.
We were then encouraged to work with Easter Seal for food therapy. Dylan went twice a week for a year to learn how to eat solid foods. He missed that milestone/chapter of his infant and toddler stage. He had to learn to like taste, texture and smells. He graduated after a year and was eating hamburgers, grilled chicken, grapes, apples, strawberries, blueberries and beans. We continued to use his allergist and later added a pulmonologist to his case. Dylan started to develop walking pneumonia and pneumonia every winter. We were visiting the ER and pediatrician office too often for chronic respiratory infections. His pulmonologist is attached to St. Francis. They see us regularly to monitor his lung function and to do a PFT (Pulmonary Function Test).
We next learned Dylan has an autoimmune disorder call hypogammaglobuliemia. This means he has low levels of immunoglobulins in his body. Immunoglobulins are antibodies that fight germs. He has low igg and his body can not fight off infections. He gets his blood work done regularly to monitor his immune system. We use the lab at St. Francis because the hospital has the unique test he needs. Dylan was also diagnosed with oral allergy syndrome. Due to being allergic to pollen you can have oral allergy syndrome. Oral Allergy Syndrome is an allergic reaction that is confined to lips, mouth, throat caused by fruit, vegetables, nuts and pollen. The last thing we learned about his immune system was he had low vitamin D which is common for kids with allergies, asthma and autoimmune disorders. So, he takes a daily vitamin D supplement.
We recently rechecked Dylan's colon by doing an outpatient procedure at St. Francis. They did an x-ray with contrast. The childlife department is always wonderful with Dylan during his test. Everything came back fine.
Dylan continues to have some small GI issues such as high numbers of SIBO and had to use antibiotics to help lower the amount of bacteria in the small intestines. Dylan works closely today with the OSF medical group pediatrics office in Morton with PNP Dana Deshon and his case manager Whiney checks in on us often. Dylan continues to thrive and is the happiest and easiest kid. By looking at him you would think he’s just another typical kid. Anaphylaxis is a hidden disease and can be described by his allergist as an orphan disease.
When I asked Dylan what his goals are he said to have food freedom. I next asked him what has been the hardest part of growing up with food allergies and a limited diet? He responded by saying watching people eat what he can’t, watching people eat special stuff like treats, desserts, candy, at an event when his stuff is plain and not as fun, going to a birthday party and having to have a cupcake that my mom packed for me and that is also plain. I asked Dylan what are you most excited to eat or try if you reach food freedom? He said ice cream, pizza, candy bars and chips with flavor like doritos. I asked him if there is anything you want people to know about allergies and he said I feel like people don't take it seriously and my life is at harm. They think it's a joke.
For our family we have to plan all our meals, restaurants, vacations, travel plans, holidays, grocery shopping, daily outings around Dylan’s anaphylaxis and food allergies. We have to make sure he carries his EpiPen, emergency bag, and that there is always safe food along with a safe environment for him. In our home we have designated areas to store his allergy safe food in the refrigerator, freezer, and pantry. We have to shop at specialty grocery stores to find safe allergy foods. His sisters are educated in anaphylaxis and know how to use his EpiPen and what foods are safe for him. We have to make sure his babysitters and Blessed Sacrament School keep him safe too.
For the last ten and half years I have constantly worried about anaphylaxis reactions. I worry 24/7 if he is safe and all those “what if" questions like what if he puts something foreign into his mouth and causes an anaphylaxis reaction. I have developed separation anxiety about leaving Dylan. I have a lot of trouble trusting others with Dylan, even his own dad. I have trouble worrying about him at school and at lunch. I don't let him out of my site very much or for very long. We live a life of fearing food. It’s so sad to fear food when you need food to survive.
My goal for Dylan is to have food freedom. What does food freedom mean? It means no longer fearing food. It means sleepovers, parties, eating whatever he wants, eating what his friends and family are eating. It means no longer needing to carry an EpiPen, benadryl, inhalers, emergency kit, to be like everyone else and to no longer feel different. To have a decorated birthday cake just like his friends would be a blessing. Today Dylan is thriving and healthy. He’s in an anaphylaxis program in Long Beach, California called TIP. It is a tolerance induction program that protein matches along with desensitizing the body by putting it into remission. When he graduates from TIP he will have food freedom and can eat whatever he wants.