Thursday, April 15, 2010

Continue to Thrive for Success

Well today we just got home from our second trip to Arkansas Children's Hospital in a week. Ok, here it goes, my son since 3 months has had multiple allergies, and sinus infections. In May of last year, he was still having severe diarrhea, so his doctor recommended that he get a scope done to see if he had something else. We had already elemented all the foods like egg, milk, soy peanuts, tree nuts, fish, and shell fish, and to the extent of wheat, rye, and other natural grains. We watched his juice intake and so on. So after three years of no success, we dicided to go ahead with the scope. He had already had an adnoidectomy and tubes in his ears, so a scope was going to be the simple part.

So he underwent the scope, and the doctor came back, said a bunch of words, and then took me to my son. I had these pictures of his esophagus, and I had no idea what I was looking at. I know he said something was wrong, that there was some swelling, and he basically had a thin lining in his intestines. After trying to sort out the words, I decided to call and get the run down on the phone. I wanted it in simple terms. So the GI doctor called me later that afternoon, and he explained that my son had eosinophilic esophagitis. Okay, so this long term was still foreign, and he just said that the number of eosinophils were high, and we had to wait for the biopsies.

Then the research begun. I read up on it, and started reading about the feeding tubes, the elemental formula's the elementation diet, which we were already on, and that it was really just currently being researched. I became educated on the topic, and wanted to make sure my son got better before the next scope. I became double cautious about his foods, and spoke weekly with his allergy doctor and his general pedes.

Two months later, another scope showed no progress to getting better. I felt down, as I kept asking why did the diet elementation not work? I instantly wanted another opinion, and did more research on the topic, talked with other allergy doctors, and contacted the Cincinnati Center for EE. We got everyone on board with Hunter's case. We dicided that Pulmicort respules were the next step for him. He has been on those, and after two more scopes, the last one done yesterday, April 14, showed, some improvement, but not much to get excited about.

We know Hunter has not been eating other foods, and has lots of allergies. His sinus surgery did not work, when they went in and widened his airways. Some how his allergies, the EE, and his sinus infections are all related, and it is going to take all the GI, ENT, and Allergy doctors to work together to help him fight this battle. Right now, we are still going to take the Pulmicort, Nasonex, Zurtec, Singular, Nasel washes, antibiotics, and a couple of other meds regularly until they come up with a better plan. Hunter goes outside and his nose poors. He has had two CT scans with in the last month, and both show his sinus cavities are completly filled. The ENT today suggested another sinus surgery, due to the openings closed back up from scar tissue.

At this point, I hold the trust in the doctors at Children's Hospital. Dr. Jones, his allergy doctor, is contacting Cincinnati, to get him seen up there. He is a very complicated child, and his illnesses always take longer to get over.

This is our most current journey, and if you have a child with these problems, please realize that there are others that are going through similar things.

Sunday, April 4, 2010

Introduction to My son with Multiple Allergies and EE

Hello, my name is Jennifer. I have a son with Eosinophilic Esophagitis, multiple food and outdoor allergies, sinus problems, and a low immune system. We found out that my son, Hunter, had milk and soy protein proctocolitis when he was three months old. He was always projectile vomiting, and has severe diarrhea with blood in it. After we took him off soy and milk, at the time I was breast feeding, which meant, that I could not have this in my diet also, he did a little better, but was still vomiting on a regular basis. When he was four months old, I called the allergy doctor in the town in which we live, and asked him to do some allergy testing. It was a long shot, since most children are not tested until the age of 2. He tested Hunter, and he was allergic to eggs. So at the age of 4 months, we were off eggs, milk, and soy, and he thought it would be a good idea for me to stay off the regular foods that are most commonly allergic for people with food allergies.

These included, egg, milk, soy, peanuts, fish, tree nuts, honey, and wheat. As a breast feeding mother, this was very hard. I managed to stick to this diet until he reached the age of 1, when he was allowed to start eating food. During that first year, he had developed pneumonia twice, and was in the hospital. That next spring, when he was turning one, he was in the hospital again for severe vomiting and diarrhea. Hunter is a very sensitive child, and when he starts vomiting or has watery diarrhea, he will lose 5 lbs or more over night. He will not eat or drink anything, so he has to be admitted to have an IV. Hunter has been in the hospital every March and October at least since he was born.

My son is now 4, as of March, and he struggles with all the allergies, and a condition called Eosinophilic Esophagitis. I want to share our experiences with other mothers with children out there with these conditions. He was breast fed until the age of 3, because he could not tolerate any of the milk replacers and due to his allergies. I hope people will post similar experiences and allow all of us that struggle through this battle to learn from each other. I know it is hard for me to explain this condition to other people who have never heard of EE. But it is a newer found condition, and research still remains to find a cure.

I will post more of our experiences during the past 4 years, and I would like to help any parents with children with food allergies or EE that have or going through the same experiences that I have encountered.