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.

1 comment:

  1. Wow....I really appreciate reading about your experiences. Since my son was diagnosed almost a year ago, it has been helpful and almost therapeutic for me to research about EE online and read other people's (primarily mom's experiences). Thank you for sharing. I just began my own blog, if you are interested in reading: I would love to keep each other updated, if you are interested!