What's new...

Sometimes new is good.

Especially when it's a new friend on the internet.

Yes, I have made a new friend who has a little boy just diagnosed last month with EoE. They are still doing allergy testing and not sure yet what they can feed him, and it brings back a lot of overwhelming memories when we first got Sam's diagnosis. I'm glad we're past that, and now I can be the one to offer help. It's really amazing how the internet connects so many strangers and becomes such a marvelous resource! I mean really, how did our parents do it?!?

So along with my new friend here came a new recipe for black bean soup here.

Now Sam is not a soup kind of kid. He doesn't really like to eat it; none of my kids do, which is frustrating for me because soup's an easy thing to make and I love it. But my kids ate ALL of this (except for Phenix because it wasn't candy), including Sam who just kept spooning it into his mouth. The best part? It took all of 5 minutes to make and maybe cost $1.50 (because I used my own homemade canned salsa).

And then you can add anything else to it, make a little soup bar.
Sam loved it with grilled chicken. I loved it with fresh tomatoes, grilled chicken, avocado, sour cream, and maybe some cheese.

Black Bean and Salsa Soup

(she has a pretty picture on her website, but I can't copy it. How did she do that???)

Ingredients:
2 cans black beans, drained and rinsed
1.5 c. vegetable broth
1 c. salsa
1 t. cumin
sour cream, green onion, shredded cheese for garnishing

Directions:
Combine beans, broth, salsa and cumin in a food processor. Blend until fairly smooth. Heat soup in a saucepan over medium heat until thoroughly heated. Put soup in bowls and garnish as desired.

I wish I had doubled the recipe though because there wasn't much left over for lunch the next day. This will definitely be made again!!
I hope Sam loves it again.
You never know.

Back to square one. And a new muffin.

So after Sam's diarrhea turned bloody indicating colitis, I pulled all dairy. His doctor said to let him heal for a couple weeks and then we'll talk about what to do next. I'm still upset that wheat didn't pass. I will try it again. But maybe soy will be next on the menu.

My Logan doctor, Sharon, said she thinks I should give him the eliminated foods once a week on a rotating schedule, every other day. So maybe one serving of wheat on Monday, soy on Wednesday, and dairy on Friday. She said she's seen it many times where people have eliminated a food for a long period of time, and then when they try to add it back, their body has a terrible reaction, worse than the reaction they were having when they initially eliminated that food. So if you add small amounts slowly, your body gets used to it and builds up an immunity to those proteins it wants to attack, kind of like getting the flu shot.

It completely makes sense to me. My only concern is, if this is a disease where genetically your body can't handle those food proteins, like celiacs with gluten, how will your body adjust and accept that food over time? Someone with Celiac would never be able to have gluten. They just can't. And what about these kids that have no safe foods, or only a handful? I know if they eat even a bite of a trigger food, they get extremely sick. I've heard some cases where kids have nerve damage from eating a bad food, including hearing loss. But maybe it would work in Sam's case because his is pretty mild? I don't know why it's so different. When I hear about all these other kids that have been tube fed for years and can eat nothing, with autism and so many other complications, it makes me think that maybe there are different conditions going on that haven't been properly diagnosed or even labeled yet, and they're all being lumped into eosinophilic categories. Kind of like before eosinophilic esophagitis was termed, all those severe cases were considered GERD or just reflux. The spectrum of symtoms and treatments is so huge, it seems like there's more going on than we've figured out so far.

My biggest fear is that Sam will eventually turn into one of those cases, where he can't eat a single food and has other complications, and I feel like what I do now will determine what happens in the future with this disease. I worry if I don't make the right decision it will be critical to his long term health. But the problem is, there is no "right" decision. No one can tell me "This works. Do this." It's such a frustrating disease!!

Well, I have another week to think about it. In the meantime, Sam was still being fussy after removing dairy, so I took him to the doctor to check his ears, which led to a breathing treatment and another round of steroids for his wheezing. He had lost almost a full pound, down to 22 lbs. Now he is much better, I'm sure heavier because he's been eating like a horse, and raging like nothing else when he gets mad, I'm hoping from the steroids so it will soon be wearing off. I found a new muffin recipe, too, that he has eaten better than anything else I've ever made for him gluten-free. He eats several a day and loves them! Again, it could be the steroids. But here's the recipe:

Banana Muffins
Makes 15

2 3/4 c safe flour blend (see my mix to the side)
1/2 c quinoa flakes
3 Tbsp baking powder
1/4 tsp xanthan gum
1/4 tsp salt
3/4 c sugar
2 Tbsp oil
1 c safe milk (I used rice and hemp)
3 mashed bananas

Mix all the ingredients, making sure not to overmix. Pour into greased muffin tins and bake 18-20 minutes.

The original recipe called for blueberries, coconut milk, and coconut oil; I don't know if Sam can have coconut, and blueberries are so messy when he eats them, so I opted to leave them out. But I'm sure it makes the muffin even more delicious!

Boo!

Sam had his scope two weeks ago, and it looked great, just as good as last time. You can tell how happy he was to be at the hospital again. There was some shadowing that may or may not have been ridges starting to form, but really Dr. Harnesberger thought wheat was a pass. And he is loving it so much!

Then we got the biopsy results.
65.

I am so disappointed. I feel so bad taking all this new food away from Sam when he's been enjoying it so much, and doesn't seem to feel sick at all! But Harnesberger said since we bothered to do the scope, we better follow what the results were. And 65 eos was the number everywhere, not just in one random high spot. Last time the numbers were 27.

So her plan is to take out wheat again, and add dairy, since dairy was the next lowest number on our allergy test results. I thought dairy would be the last thing to add, since I thought it was the obvious culprit, but he is more allergic to soy and eggs, and those numbers I guess correlate 50% of the time.

Sam has had dairy now for one week, and all day today I heard him say "owie! owie!" because his butt is so raw from the diarrhea. This is the first time ever in his life he has had cows milk to drink; and he loves it! Of course he does. Because it's something I'm sure I will be taking away, sooner than later this time. Did I mention his new love of cheese puffs? This poor kid is going to be so mad at me!

I don't know how long to expect diarrhea, but it can't be a sign of a good thing. In my opinion, dairy is a fail. He hasn't been eating very well, either, although he still wants to eat all the dairy things I've been giving him. He hasn't thrown up at all though.

Harnesberger is back in town next week, and I'll see what she wants to do. My poor little Sammy.