We met with Dr. Harnesberger yesterday, and I must say I feel a bit better. She looked at the pictures from Sam's scope and said she could see why Dr. Pohl said Sam was better; the furrows are much less, the plaque is much less, and there possibly could be sampling error as far as the numbers go. And Sam was as crazy active and happy as ever while we were there, so he is obviously not visibly sick. The one thing that is still a question is why he is not growing; yes he is a couple pounds heavier, I think from the steroids, but he has not grown in height in over 6 months. Dr. Harnesberger has never had a patient like Sam, with no symptoms, eats a ton, doesn't act at all sick, and yet won't grow and still has high eosinophils. She is stumped.
So we went over a few options, deciding that since Sam seems to be doing so well and not showing signs of discomfort, it wouldn't hurt to just watch for awhile and scope again in four months. I chose to not do the daily steroid, and then we'll just see how Sam does. Keep him on the same elimination diet {whew!!}, come back in two months for an evaluation. She said he could still be catching up on his growth; and he has until the age of 8 to keep catching up and still reach his full growth potential. So if we are still missing something, we have some time to figure it out. She is also going to present Sam's case in front of a panel of GI docs that have a conference twice a month. That is on Friday, and she will call me Monday morning with any insights they might have. I was very pleased with this visit.
I do still have questions and concerns, but I feel at this point I don't need to be overly worried that anything critical is being overlooked. Sam is happy and eats well, and that is a good thing. We'll see what the next few months bring. For now, Sam can continue enjoying his vegan rice cheese. He ate a whole pack in the last two days!
This is Sam.
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.
.jpg)
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!
No comments:
Post a Comment