fEEd me frEEly: Yes we are still here.

Wednesday, July 6, 2011

Yes we are still here.

I haven't posted in a while, because we really haven't done anything new besides asthma attacks and worsening eczema. After Sam's horrible reaction to dairy in January, we have just been doing the allergen-free diet for the past 6 months to let him heal.

Well, he had another scope May 24, and his esophagus looks better than ever! The numbers were 26 eosinophils at the highest, 0 in some places, and the reactive change was significantly better than the last scope. I told Harnesberger that I wanted to try wheat again, since he seemed to do so well on it before even though the numbers were higher, because honestly I think the numbers are being affected by environmental allergens in the air. Really, I'm just stubborn and I want wheat to pass. So we're back on wheat. Yeah!!

Sam was so excited when I asked if he wanted some bread. Wheat opens up so many new options, and he is in heaven. So far, after more than a month, he is eating wheat with no apparent problems. The only concern I have is this weird cough every so often, not all the time. But he is happy and eating tons, and looks like he's growing. Although I don't think he really is. But he looks good.

I'm not sure what to do next. Call it good and say wheat is a pass without doing a scope again? I don't know. I'll wait a few months and see how he seems to be doing. His birthday is in 2 months, so I'm anxious to go to his appointment then and see how he's grown.

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)

He is the sunshine of our home, a sweet, smiley, cuddly little guy who stopped growing at about 9 months. He has gained about 2 pounds in the last year, has gone through a lot of testing, and finally at almost 20 months we are getting some answers.Sam had his scope today, and the doctor said it looks like classic eosinophilic esophagitis. He has ridges in his esophagus with white plaques (which is the actual eosinophils you see). I asked if we could keep the adorable get-up. They kindly said no.

I was prepared for this, our primary doctor and the two GI doctors and allergist and new-found friend up the street had told me about it, said he looked like he had it, and wouldn't be surprised if he did. I did my research (which there's not much out there), and kind of knew going in what we were facing. In fact, I think I would have been disappointed if it came back showing everything was normal. This is something we can deal with, get under control, and help Sam live a normal happy life once we figure out what he can eat safely. It's an answer, and I am grateful for it, whatever it is. Now I won't say that answer didn't come with some emotion, anxiety, tears, and feelings of inadequacy. Following an allergen-free diet is overwhelming, even with a background in dietetics, and it was hard to decide where to even begin. Sam might eat a lot of food, but not a lot of types of food. He is picky. All of Sam's favorites are out: chicken nuggets, fish sticks, salmon burgers, noodles, sugar cereals, cookies, ice cream, yogurt, and my homemade wheat bread. And all of his dislikes were in: chicken, hamburger, potatoes, and veges. He does like rice and fruit, but after the first day he is already sick of it. He is DONE with rice chex. And I have not found any allergen-free sweet cereals.So I've been scouring the web. That was even more overwhelming, so I decided to dedicate a blog to all my favorite recipes, tips, and blogs I have found, so I don't have to try and remember where I found this or that. I hope this compilation can help others who are diagnosed with EE, as well, because there's not a lot out there on this disease. And it's hard to find recipes that are gluten, dairy, egg, soy, and nut free. Hopefully we will soon be able to cut that list down, but for now that's what we're doing.It's a roller coaster ride, and I'm sad and happy all at the same time. Sad for my poor little Sammy that's been suffering and can't have the foods that make him smile, and happy that we now know what's wrong and {kind of} what to do, and Sam will soon be a healthy little boy!