Wednesday, December 19, 2007

Newly Diagnosed

My son was just diagnosed with Eosinophilic Esophagitis, along with multiple and severe food allergies. Among his many allergies are: milk, soy, rice, oat, egg, and peanut. This poor baby has been fussy his whole life, and doctors have been telling me he's just a fussy baby. It makes me so angry that I was blown off, and it has taken so long to uncover what I knew deep down all along. Our pediatric GI gave us a special formula to try and give him, but he refuses to drink it. We had him on soy milk, because at age 1 when we tried to put cow's milk into his bottle, his face and neck broke out in hives, so we knew he was allergic to dairy. But, it turns out that since he's also allergic to soy - the soy milk that we were giving him was causing all these internal problems, which is the eosinophilic esophagitis. We should have had him on this special amino-acid-based formula all along, but no one truly believed (except me) that he really had a problem. An issue also for him is he is highly allergic to orange and grapefruit - again, the peds gi gave us a scrip for some vitamin drops, but when I got the prescription filled and looked at the ingredients at home, they contain "oil of orange" - they are checking to see exactly what that is, and if we can give those to him or not.
So, it has been interesting, and sad - almost every day we find something that we have been giving this poor baby for the past year or longer (say, Cheerios in church) and he is allergic to them!! I have found a wonderful local support group for parents of children with food allergies, and they are going to be a tremendous resource.

3 comments:

Unknown said...

I'm a mom of a 5 year old with EE that was finally diagnosed after over 4 years of doctor visits, tests and no one believing there was something wrong with my son. I have a google alert set up for EE and I can't believe how many times I read stories just like mine (and yours). I'm just so happy for you that your son was diagnosed early. My son now has food aversion and it is extremely difficult to get him to eat even 900 calories a day. He's on the amino acid formula as well since he can't have dairy, soy, wheat, eggs, fish or nuts. The whole thing has turned our lives upside down since it's so hard to shop and cook and everything's so expensive. Just wanted to leave you a note to let you know you're not alone. There are many of us going through this too and I really hope things work out for you and your family.

Jeni said...

Jill Berg!!!
Where are you? Don't you post on here anymore???? I'd love to see some of your work!
Jeni Barg

Jeni said...

Jill Berg!!
I hope you get these messages. What's your email? Yes, we have some of that paper but only a couple sheets. I'll pull it for you.