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Jacob’s Story

JACOB’S STORY

Around the time my son Jacob was 3 months old, he developed a cough that later turned into constant, round the clock vomiting, sleep disruptions, back arching in pain and a lot of gas. Until he was 10 months old, he was breastfeeding and being supplemented with soy formula. After a bite of frozen yogurt, he experienced an anaphylactic reaction, which clued us in to thinking about food allergies. After many exhausting trips to the GI and Allergist in Memphis, TN and several scopes, we were told it was just GERD and that he would “grow out of it”. It has nothing to do with food, we were told. I felt differently, but was labeled as a crazy mom.

By the time Jacob was nearly 2 ½, he was about the size of an 18 month old and had stopped growing. He was not verbalizing. He was not sleeping more than 2-3 hours at a time (neither were we). He was vomiting 30-40 times per day. We removed the top 8 allergens from his diet to no avail. After one ER trip due to dehydration from respiratory problems and more vomiting, he had another attack brought on by accidental ingestion of milk (was in a popsicle that the nurse brought him). He was administered Albuterol and steroids to counteract it. That afternoon and evening, he slept for the first time more than 6 hours at a time since he was a newborn. His allergist prescribed a daily nebulizer treatment of Pulmicort and Albuterol (which was later tapered off). This greatly alleviated his problems and allowed for more sleeping both at nap-time and during the night.

Jacob was put on a regimen of anti-GERD medicine and several other meds-Reglan, Tums, Zyrtec, Benadryl, Maalox, Pulmicort, Prednisilone, Nexium, Prilosec, Prevacid and others in order to relieve his symptoms. Some worked for awhile, none for the long term. We tried everything including chiropractic, acupressure, and diet modification. We had to sleep with him upright on our shoulders in order for him to not cough and vomit). After his 2nd scope in Memphis, we were told that he had a high eosinophil count in his esophagus. After a round of prednisilone, he seemed to be a little better, but the vomiting never completely quit. Late nights of internet research brought us to Dr. Putnam at Cincinnati Children’s. He looked at Jacob’s last set of slides in December 2002. In April 2003, Dr. Putnam scoped Jacob. When the lab results were in, he suggested formula only for a period of time for healing, then the plan was to add foods back in one at a time and rescope to see if he is tolerating the food.

Allergy testing (skin prick, RAST and patch) showed mixed results. At the beginning, he would light up like a Christmas tree on everything except for a few weird things. Nothing we could create a diet out of. The tests never agreed with each other. The last set of skin prick tests done in Houston showed no reactions. Not even for milk or egg, which in the past we witnessed an immediate systemic reaction to. So much for testing. Within two weeks of formula, Jacob made a drastic turnaround. The vomiting lessened until it became a rarity. We were able to drop the asthma treatments except for times of flares or upper respiratory issues. He began to verbalize. He began to grow. He became an agreeable kid with a hilarious personality. He was eating nothing. He continued on Pediatric E028 (orally) from April 2003 until October 2004, when we reintroduced foods, one at a time. We started with rice, then potatoes, then peaches.

By December 2004, we had moved to Texas and he had trialed potatoes, rice and peaches. The scopes showed active disease. From February to April of 2004, he trialed potatoes only. Scopes in April showed active disease (this time, he had sinus-infection like symptoms along with periodic vomiting). Needless to say, we were pretty disappointed. Chicken was next on the list, which also proved to not be successful by scope results in December of 2004.

Fast forward to today. Since chicken, we have let him taste a myriad of foods to see what food he would stick with for a trial. Each one proved to be an issue. He would either complain that it hurt his stomach or he would just quit eating it for no known reason. The list is: rice (again), raisins, grapes, bananas, bacon, and apples. For a trial to be run, he has to stick with a food for at least 6 weeks. This wasn’t happening.

We found a liquid vitamin supposedly made up of sea vegetables along with some other ingredients (aloe vera, honey and natural cherry flavoring). He would tolerate it and it gave him a different flavor in his mouth. The scope results from this “trial” came back clean and normal. Of course, there is no real proof that those ingredients would be “safe” for him alone. There’s no indication that there was a whole protein in that vitamin. The processing and the tiny amounts within each dose may not have been enough to trigger a reaction. So, the only thing we do know is that it didn’t hurt him and he enjoyed the extra taste as a treat.

We are left now with a few options. One, is to continue with formula only and wait for a better treatment. Two is to trial yet another food, rescope and see what happens. Three is to trial a food along with Flovent. Four is to ready him for the upcoming anti IL-5 trials. Active disease must be present, but this would go hand in hand with trialing another food or foods with no meds as he has done in the past. And . . . continue to pray . . .