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Chayce’s Story

CHAYCE’S STORY

Chayce was born June 6, 2002, with a fairly normal pregnancy. He was twice the size of sissy, weighing in at 8 pounds 9 ounces. Chayce came home and was was on a “bili” blanket for 10 days because of jaundice. He seemed to be fine up until he was 6 months old.

I had just started introducing solid baby food to Chayce and he seemed to be eating like a CHAMP. He got what I thought was a 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 his eating. I then took him back to the doctor as Chayce was struggling to have a bowel movement. He was literally lifting the carpet, to have one. We were introduced to 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 the Gastro Department, where they discovered he was SEVERLY impacted and prescribed him Miralax. After this Chayce started crawling and walking, to us it was like the medication was a miracle, Chayce could move, now lets try and get some food him right?……..

Not according to Chayce he now was projectile vomiting, pointless fevers, back to bowel trouble, and not eating anything, out of concern for his nutrients, we placed him on Pediasure, Then Chayce was started to be covered in hives from his head to his little twinkle toes, and I knew this was the worst eczema I had ever seen. My pediatrician at this time, gave up on me, actually was tired of seeing me and calling me back, he just looked at me one day and said “I do not know what else to do for you, I can’t refer you to anymore Doctor’s!” He had sent us to an allergist (locally)that looked at me and said “Your son looks perfectly healthy, you are not taking care of his eczema properly” Marc and I were just fuming and could not figure out what just went wrong.

In the mean time The Pediatrician determined that Chayce was in need of Speech Therapy, I walked into her office, and I felt really comfortable and I just broke it all down to her what exactly Chayce had been through and what things had been like at home, and she said You need to see another GI and Allergist. She got the names, and we got Chayce into see the allergist first, He determined on the first visit that Chayce was severely allergic to MILK, SOY, PEANUT, BEANS,. At this time Chayce is living on Pediasure, my first thought what in the world was I gonna do for Chayce? He suggested that we switch over to Rice Dream Milk, so we did. 1 month later we met with GI in Michigan and he did an endoscopy on Chayce that determined that Chayce was suffering from severe REFLUX, we were prescribed Prevacid, this has been terrible. Chayce was back home and not getting any better he was sleeping standing up, still had the hives, vomiting when I tried to feed him.

We go back to the GI and he re scoped Chayce to find out that now Chayce has Eosinophilic Esophagitis (EE), the family doctor order blood test. In the mean time Chayce started Swelling like within hours. The swelling completely covered his body even his testicles. I rushed him to the ER where they drew immediate blood draws and ultrasounds. It turned out that Chayce was now suffering from Protein Malnutrition, he had no protein, calcium, magnesium, or phosphorus in his body. Not to mention he had lost 7 pounds. At Beaumont his GI wanted to place a NG tube into Chayce for an elemental formula, which scared us to death. I begged and pleaded for them to let me try with Chayce to take the formula by bottle, he did well after a fight. Currently drinking 64oz. He was in the hospital for 5 days and now is gaining weight, swelling has gone down, got his color back, and levels are starting to show, but not where they need to be quite yet. I never knew his Elecare formula could work so well. We wanted a second opinion being that Chayce is still suffering from Asthma symptoms, the allergist will not address, and the GI is telling us to force food when all he does is vomits and gets hives. We have turned to Cincinnati Children’s Hospital, specifically Dr. Putnam and his staff to treat Chayce. After several visits with Dr. Putanam, we are on the best treatment regime that has satisfied Chayce in his little 4 1/2 years of life. His reflux is controllable, he still does not eat, he is g tube fed with a Mic-Key Button. He takes medication to control his asthma, reflux, constipation, allergies, and carries an EPI Jr. to protect him from anaphylasix reaction. Chayce is much like a typical 4 year old, attends preschool, his difference he is TUBE fed and there is NO Interest in Food. He does love Dum Dum Suckers , and Ice! Dr. Putnam is putting off food trials for until further notice, each time we do a food trial Chayce ends up very ill.

Scholeigh
Chayce’s Mom