Make A Child Smile

Chayce's Story
written by mom Scholeigh

Chayce was born June 6th, 2002 with a fairly normal pregnancy. He was twice the size of sissy, weighing 8 lbs 9 oz. When Chayce came home he was on a bili blanket for jaundice for 10days. We thought things were fine until Chayce was 6 months old.

I had just started introducing solid baby food to Chayce and seemed to be eating like a CHAMP. He got what I thought was a simple cold, slight fever, having bowel troubles and congestion. He was placed on an antibiotic for an ear infection and then he started cutting back on eating. I took Chayce back to the pediatrician, as he was having a difficult time passing a bowel movement. We tried suppositories, laxatives and enemas. Nothing was working and at this point I could not understand why Chayce was so impacted. At 10 months, Chayce was FINALLY referred to U of M Gastro Department where they discovered he was severely impacted and prescribed him Miralax. After Miralax, Chayce started crawling and walking to us. This medication was a miracle. Chayce could now move.

Now, Chayce was projectile vomiting, pointless fevers, back to bowel trouble and still not eating anything, out of concern for his nutrition Marc and I placed Chayce on Pediasure. Then Chayce was covered in hives from his head to his little toes, and I knew this was the worst eczema I had ever seen. My pediatrician at this point gave up on us, he never returned phone calls, our visits were all dead end. He did send us to an allergist, that said to me "You have got to be kidding Chayce, is too small to have allergies. You need to take better care of his eczema!" I still do not know how I made it home from that doctor's office visit, I was so furious to be called to the carpet when I knew in my heart that Chayce had food allergies, but I could not figure out to what!

In the meantime, the pediatrician had sent Chayce to speech therapy, which is here where we found out that Chayce was suffering from dysphagia and apraxia. With all the tests and complete history, she suggested that I talk to another mom whose child suffered from an Eosinophilic Disease, she told me what doctors to try and get Chayce into. After the insurance battle, I was able to get Chayce into the allergist first, which was only 2 weeks after the first allergy test. At that first visit, he determined that EVERYTHING that Chayce was consuming, he was allergic to. Milk, Soy, Peanut and Beans, then he referred us to a GI at Beaumont Hospital where, he did an endoscopy and found results that Chayce was suffering from Eosinophilic Esophagitis. The problem was that he wanted me to get Chayce to eat anything, except the things that he was allergic to, after 2 months of this, Chayce shut down, started swelling, suffering from anemia, protein malnutrition and low counts of calcium, magnesium, or phosphorus. He was put on an elemental diet consisting of formula only. In May 2005, we got the chance to visit Dr. P. Putnam at the Cincinnati Children's Hospital Medical Center, whom is well known for interim treatment for Eosinophilic Disorders, as there is no cure yet, for this terrible disease.

Currently Chayce is g-tube fed, he does not eat any solid food. He supplements with a juice box called E028. He started preschool in the fall of 2006 and that is going fairly well for him. We have a continued battled with all the food allergy situations. In 2006, Chayce underwent 6 biopsies, had ear tubes placed due to 21 ear infections and had extensive dental surgery done because of the damage from his reflux. Chayce also had DNA testing done that came back negative, so the mystery of the unresolved skin rashes and continuous joint pain, goes on.

We were told by Chayce's GI at Cincinnati Children's Hospital, that he could start food trials but because of Chayce's severe oral aversion, solid food is not practical in the near future for him.

Although, facing this illness with Chayce, it has completely opened our lives. It is ultimately heartbreaking to watch your child go through fears of discomfort, surgeries, and procedures on a daily basis. The best part of Chayce is he still wakes up every morning with a glowing smile on his face.