Well hello there.

Yes, I have been neglectful to this blog. No news is good news, right? In this case, I'm happy to say that is exactly right.

So we added wheat back again in June. He did great on it, no visible reaction, and he ate wheat like none other. It's amazing how simple life can be when you don't have to try to avoid gluten. I debated whether or not to scope, because honestly, if the numbers came back higher, I wouldn't stop giving him wheat. He loves it too much and it doesn't seem to bother him in the least. So we decided to forgo the scope and start adding something else. This time we decided on soy, which I was a little nervous about. I don't know why, just a gut feeling. So the end of September we started by just adding a little bit, maybe some soy yogurt and Costco hot dog buns. No bad reactions after a week, so I went all out and got him soy milk and gave it to him every day. (Turns out Patrick likes soy milk too...)

Still good.

After two months on soy, we did a scope right after Thanksgiving. Harnsberger said something was bothering him because the esophagus looked inflamed and like it was forming ridges and plaques. BOO....we were not happy with that. Because now what do we do? Is it the soy, the wheat, both?? We would have no idea. We still had to wait for the numbers to come back to know for sure, but already I was thinking I would just cut out the soy and scope again in two months.

It took so much longer this time to get the results, but well worth the wait. Harnsberger called with the best test results we've ever had! Up to 20 eos, and it appeared the esophagus was healing because of the presence of neutrophils. We all couldn't believe it! Harnsberger said it might have looked worse if he was exposed to something like peanuts right before the scope, and it was just a reaction to that. Really, we don't know. But I'll take the good news, no questions!

(someone forgot to take off the snaps while he was out....surprise!...)

So now we are adding seafood. And this little boy loves his fish sticks. Worcestershire sauce is also a go, if needs be. Hooray for the little things!

And on a side note, Sam was back on the charts at his three year check in September, the first time since he was 9 months old. Of course, he barely was on the charts, and that was only if you measured him lying down, not standing. But at least he's growing!

In the meantime, he can't keep his hands off his new baby brother...

Merry Christmas!!

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.

Hello, we haven't seen you in a while....

I took Sam back to the allergist this week.

We hadn't seen Dr. Taylor since last May I think, so I figured it was time to redo some allergy tests and see if any new ones popped up. Mostly, I wanted to test for some seeds and nuts so I could add these to his diet without overly wondering if it was bad for him. Coconut and sesame were safe (he didn't have sunflower), so I'm taking it and running. Sure I'll still wonder if it affects his eos in his throat, because allergy tests don't tell me that for sure, but a negative allergy test makes me a bit more confident, even if it's a false hope. If I don't see any outward aversion than I'm keeping it. I think those muffins and ice cream made with cococut milk sound like a special treat for Sam he is going to love!

Thankfully everything else was pretty much the same. No new ones- still egg, dairy, and peanut- but egg was not as big of a reaction this time. On our next scope, I'm going to run some RAST tests again to look at the numbers; Taylor says the RAST tests seem to correlate better with eosinophilic disease. He is also going to an eosinophilic conference in San Fran, and he will let me know what New and exciting things they present.

So I'd say we're good here for now. Still eliminating the top 6 and Sam is happy and growing a tad. He weighs 23 lbs 12 oz! Thanks maybe to a little steroid run last month. But we'll take it.

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.

A real hamburger.

Hamburgers are so much better when you can eat them with a bun. And when Dad threatens to send you to your room because you're being {goofy} naughty and not eating, just block him with your hand and food and yell "no".