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".

Our first food trial.

WHEAT!

I'm so excited! It's been two months since Sam's last scope, so it was time to either scope again or just start adding a new food. I called Dr. Harnesberger, and based on Sam's 1 and 1/2 pound weight gain and seemingly good health, we decided to go ahead and start wheat, see how he does for the next couple weeks.

I have so many things I can't wait to give him....noodles, my homemade wheat bread (without feeling guilty), grilled cheese and quesedillas with his special rice vegan cheese, chicken nuggets, graham crackers, cookies, pancakes, cheerios....so many things I can make dairy and egg free and still taste normal because I can use wheat. And I don't have to worry about weird hidden gluten-clad ingredients like caramel color or modified food starch.

Here's to hoping Sam does well the next couple weeks, and to a happy kid because Sam is going to be in heaven!

I Gave In

Before Sam was diagnosed, one of his favorite things to eat was my homemade wheat bread. He has not had it for 7 months now, and honestly he has never begged for it, kind of like he knew he couldn't have it. Well, this morning Patrick made French toast, and Sam saw that loaf of bread and started throwing a fit because he wanted some. He wanted nothing to do with his gluten-free muffin with maple syrup, or grapes, or juice, or anything else.

So I let him. I figured he's been so healthy lately, gaining weight, growing out of some clothes, and we're going to trial wheat first anyways, why not? Actually, I know why not, but still, he was so so happy to have that little piece of bread, and he's not sick afterwards. I had to give in. What can I say, he's spoiled.The problem is, he wanted more than one slice. So we put powdered sugar on his muffin; that inspired about two bites after he licked all the powder off. So we resorted to the dum dum and that completed his breakfast.

Sigh....

Finally, Some Good News

I called Dr. Harnesberger and told her I didn't want to wait another two months for a scope. I felt like we were just sitting doing nothing, and Sam wasn't getting any better or worse. I want to start adding things in, or taking more things out, whatever we need to do. I don't want to just do nothing. She agreed and we had a scope last week. This time Dr. Harnesberger did it. Although inconvenient not to be down the street at Riverton Hospital with an early morning appointment, I wanted her to see his esophagus herself. So we headed downtown to Primary Children's at 1pm with a cranky child who had not eaten anything all day. But I was more than happy with the results! Dr. Harnesberger said his esophagus couldn't look any healthier. The pictures showed it perfectly, smooth as could be, well vasculated, and no visible white patches. Hooray!! I wanted to add wheat back in that day, with such good results, but she said to wait for the biopsy. That call came yesterday, with more good news. The highest number of eosinophils found was 27 per high powered field. That's a 75% decrease, and about as fast as the esophagus can heal. She also explained that the basal layer was significantly thinner, indicating less inflamation. Dr. Harnesberger was more than pleased, as was I. Although the disappointing news was that she wanted me to keep Sam on the same diet for a couple more months, and then scope again before adding food back in. She said we're on the right track, but she wants to be sure, keep an eye on him first.

So for now we'll stick to fruit, corn chex, and cocoa pebbles. And of course hot dogs. Broccoli has become a new favorite too, thank goodness! I have to say, he has grown in the last week. A lot of his clothes he wore the week before no longer fit. Really, it was overnight. So maybe he'll start catching up now! But either way he is a happy happy boy.

We just love to see his smile!

Birthday Stats

Sam turned 2 on September 2. I can't believe it! My sweet sister made him an allergen-free cake, and it was so fun to watch him eat a real treat with real {delicious} frosting. To see the full birthday festivities, go here. We haven't had our official well-check, but I took him in a few days before for weight and height checks when he was done with his Singulair. He was 21 lbs 3 oz, and measured 31 inches. I don't know how accurate the height is, but his weight stayed the same. No growth on the Singulair as far as I'm concerned. He has however outgrown his size 3 shoes, so that's a milestone. Slowly but surely, this kid will grow! He's still in 6-12 month clothes, and some 12-18 month shirts.

Right now we are doing nothing besides the 6-food elimination. I haven't started the Lomatium yet because I kind of want to get a scope first to see if he is getting better or worse. If it looks worse, then I will start the Lomatium and see what it does. Then I could tell people with surety if it actually works. I really want to be able to help other people too. I think that's the only reason we go through these trials, so we can help others around us. So things are just kind of normal around here. Nothing new yet. Sam seems to be stable, not better or worse. Although he did get sick yesterday and is on steroids again for a couple days to help his breathing. So maybe he'll gain a couple pounds again. He sure is a happy kid though! That's all I can ask for at this point. :)

Update #3

So I've been seeing this lady in Logan, Sharon, who is a chiropractor trained in Australia and has a masters in herbology. Her techniques are amazingly effective, and I have been seeing her for my neck and mono issues, and also high cholesterol, since January 2010. Now I have seen countless doctors, chiropractors, pain clinics, done acupuncture, phsyical therapy, medication, ANYTHING to try and help my chronic neck and shoulder pain I have dealt with for 16 years. I lack a curve in my neck, which causes the chronic muscle tension, and no one has ever been able to relieve my symptoms for longer than a few hours. No one. Ever. Until I started seeing Sharon. Her gentle way of manipulating my own body to correct itself is beyond amazing, and after making the treck up there (3 hours round-trip) for the past 8 months, I can honestly say I am a different person. My neck is so much better, and the pain so infrequent now, that I can hardly believe it. She has also had me taking supplements for my cholesterol and herbal concoctions for my mono, and I still need to get a blood test to see what effect that has had. But the fact that she fixed my neck is a miracle in itself.

I tell you this, because she also had some ideas for Sam when I went there last Thursday. She thinks food is not the root of the problem, and just smiled knowingly when I told her his numbers had doubled after the food elimination trial, like she expected that. She believes eosinophilic esophagitis is a problem from birth, in the embryo, and once the esophagus and body as a whole is healed, food will not be a problem in the future and he should be fine. She gave me Lomatium, a type of plant, to give him twice a day, and that should heal him.

It sounds too easy, but I'm willing to try it. It can't hurt at least. What if it worked? I trust Sharon immensely. She is one of the most intelligent people I know, I think with seven different degrees. And the sweetest little lady who just loves helping people feel better. She's not a quack trying to get me to buy all these supplements from her, trying to make money off me. In fact, almost everything she's had me take are supplements I bought myself from Whole Foods, or even just olive oil and lemon juice for my gall bladder. It's just alternative stuff she knows works, because she has studied and researched it for years. The Lomatium is actually being looked at in treating AIDS because it's such a powerful healer; she didn't even know how much longer it would actually be available in the alternative therapy world if modern medicine starts really using it.

So I'm going to get my blood test done, and if my cholesterol is below 200, I'm trying the Lomatium for sure. That's the plan....today....

Update #2

Dr. Harnesberger called me Monday with the resulting consensus from the conference on Friday. Unfortunately Dr. Pohl didn't make it there. LOL They all agreed that it didn't seem reasonable to put Sam on an elemental formula given how much he eats. Nor do we want to keep putting him on steroids. So they decided we should try Singulair for a couple weeks and see if that helps him grow. Apparently it's a new treatment. We'll see what happens. I'm not expecting much in two weeks.

Then today we saw Dr. Gleich again. I wasn't too excited about this appointment, since last time we waited over two hours. The nurse assured me we wouldn't be waiting that long, and she said I could slap her if she was wrong. I told her I would take her up on that. Anyways, I only waited about 40 minutes, and Dr. Gleich was totally enamored by Sam. He kept saying how cute he was and called him a little "Teufel". That means "devil" in German and it is his new nickname, if I can ever remember it. I have to keep asking Pat.

So, Dr. Gleich said he was concerned about Sam's lack of growth and the high number of eosinophils and subsequent inflammation still present, even without any other symptoms. He really wants to clear out the esophagus so it can heal, and then start with a clean slate finding out what foods he can't have. The only way to really do that is with the elemental formula for 4-6 weeks. He said the steroids are like a bandaid, but the elemental formula is like stitches, actually healing the esophagus; 95% of patients have a clean scope after formula. He wants me to try Elecare for a week, just seeing if I can "use my charm" (really??) to get Sam to drink it, not eliminating his other foods yet. See how it goes, and then come back next week. He really overestimates my "charm" on an almost 2 year old.

I don't know. It makes sense, but I know Sam will not drink that stuff. And what do I do about what Harnesberger said? I think I have too many doctors involved. Every one of them says something completely different, and who am I supposed to follow? Dr. Gleich I think knows the most, has the most credentials. Ultimately, it's up to us what we do. I just wish someone would decide for me.

Update...

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!

Well, I can't even begin to describe how frustrated I am at this point.

Dr. Pohl called yesterday, less than 24 hours after surgery, with the results. He sounded very pleased, said the eosinophils were indeed gone from the small intestine, and he looks great and thinks at this point he is doing really well. He kept going on about how he didn't feel he needed to scope again and we could just see him in a couple months to see how Sam was doing with his weight...and....wait....could you please tell me what the numbers are? Well, he starts out about how he doesn't really like to look at the numbers and he prefers to see how the patient is doing clinically and not worry about the numbers, because the higher the number does not mean the sicker the kid...and Sam looks like he is doing well....Sam's numbers were 50 on the first scope....and they were 75-100 this time.....STOP....what?!?! He didn't even want to tell me the numbers, and even though the numbers have DOUBLED he still thinks Sam is doing great because he kept on the 2 lbs he gained while on a heavy steroid??? And because he's a happy kid like he always is??? I understand the actual number doesn't matter, but I absolutely understand as well that it IS important if that number goes up or down. The two separate doses of steroids should have almost wiped out the eosinophils in his esophagus, if not completely, and the fact that they came back at even higher numbers means that he is still eating something not good for him! HE IS NOT DOING WELL JUST BECAUSE HE LOOKS WELL!!

The problem is, Sam's only symptom at this point is not growing. (And maybe some weird looking poop, which I don't even know what normal is anymore.) He doesn't throw up. He doesn't act fussy. He doesn't stop eating. He's active and crazy as ever. He doesn't look scrawny. He just looks younger than he really is. So how am I supposed to guage when a food is making him sick or not? I can't just wait a year and see if he grows. And then apologize to him when he's 18 years old and 5 feet tall. "Sorry Sam, we thought you were growing."

Sam eats a lot of food. He ALWAYS eats a lot of food. Dr. Pohl does not believe me that Sam rarely loses his appetite and always consumes a substantial amount of calories. He thinks I'm a naive parent who doesn't really know, and he's probably eating less than I think, and he thinks Sam will not eat well when he is eating a food making him sick....

THIS IS NOT TRUE!

Sam would eat cheese all day long, and I gaurantee that dairy is a trigger for him. And obviously he is still eating something bad, and he is eating a lot of it because he only eats things he likes, and everything he eats right now is a lot.

So I hung up with Dr. Pohl assuring me that Sam is better and I should absolutely add wheat back into his diet.

Whatever.

So I called our allergist Dr. Taylor, who I really like. I asked if he talked to Dr. Pohl, and the first thing he said to me was "yes, I got your results just now and I was disappointed to see the numbers had gone up". Finally, I wasn't just a paranoid parent and I know what I'm talking about! Dr. Taylor totally agreed that the numbers indicate that Sam is not doing well, and something is still wrong in his diet. He was surprised that Dr. Pohl said the complete opposite. So he went on to tell me that the next step is to either do an elemental formula, or eliminate the next group of foods that might be triggers.

That would only be EVERY SINGLE FOOD SAM IS CURRENTLY EATING!!

Now add to our list: chicken, beef, corn, potatoes, rye (I thought that was already part of the gluten thing?), rice, and peas.

So what do I feed him you ask? I have absolutely no idea. Fruit, I guess. This is an absolute nightmare.

This morning I got a call from Dr. Harnesberger, our other GI doctor we've been consulting, and who put Sam on the steroids earlier. She left me a message saying she was not happy at all with the biopsy results, some fields were over 100, and she went ahead and made me an appointment for Tuesday and could I call back to confirm. I called and talked to her for a minute; she couldn't believe what Dr. Pohl had told me and she was going to have a chat with him. Why else would you do a scope if you didn't care what the numbers said and only wanted to diagnose clinically?? She said at this point not to change his diet and to wait until we discuss on Tuesday. I'm afraid she will want to just put him on a feeding tube and forget about the elimination diet, and add steroids back in. That doesn't make me happy. This whole thing doesn't make me happy. It seems so rediculous that this little boy who looks so healthy and full of energy and smiles, and eats so much food, would need to be put on a feeding tube. That's just crazy.

Why do we have this stupid disease that no one's ever heard of, and we don't even have the normal symptoms?? Maybe there's something else going on that we're still missing. I don't know. I can't even start to think about what he's going to eat now. How I am going to keep the calories high, let alone keep his weight on. What a mess.

I guess I'll enjoy the weekend while I can still give him his vegan rice cheese and hot dogs. He has no idea what's coming, poor kid.

Stupid EoE.

Today was the big day I've been anxiously waiting for.

It has been such a roller coaster these last few months, thinking one day he was doing great, and the next day thinking he was just getting worse. But for the last couple weeks I've really been optimistic. He's kept on the weight from his last dose of steroids, has had no breathing problems, and I think even gotten taller. I think his face looks chubbier too. So I couldn't wait to get the scope and see if his esophagus had healed.

He weighed in at 21 lbs 2 oz, and measured 30 in. That is awesome. The surgery was quick and Dr. Pohl said he did very well. The white eosinophil plaques are still there, but much less, and nothing in the small intestine. He took several samples for biopsy. We are so happy!

So now we wait for the results, but it really seems he is getting better. I'm anticipating a grilled "rice" cheese sandwich in his future, and maybe some cookies.

The only frustrating thing now is what to do in the future. My GI doctor does not want to scope again, just watch symptoms and determine by observation if a new food is a trigger. The problem is, Sam's only symptom is not growing, and that is going to be hard to tell right away. My doctor does not believe me that he eats well, all the time. As terrible as it sounds, I would like to scope three or four weeks after introducing a new food so we know for sure, right away, and can get this over with. I don't want to be here a year from now realizing that Sam stopped growing, after we introduced all these foods thinking he was doing fine because he was eating a lot. And at what point will he not be able to recover from a growth stunt? I'd even be fine just doing three more scopes, one after wheat, soy, and seafood, and just not ever trying to add back dairy and eggs since he's allergic, and obviously never nuts. Is that so bad?

I wish I could find someone who is in the same situation, who doesn't have these obvious semi-immediate reactions to trigger foods. Who doesn't throw up or stop eating well. And who is too young to express discomfort when they eat certain foods. The only thing I have to go on is growth.

Maybe he'll keep growing a lot and we won't have to worry about it. But I know when he has a breathing problem or eczema flare-up, which I'm sure will happen, I will worry it is because he's getting sick again, and I won't know for sure. Nobody knows for sure how much it correlates. So what do I conclude at that point? Do I eliminate whatever food I had most recently added back in? Should I consider breathing and skin issues to be EoE symptoms? No one can give me an answer.

Anyways, enough of my slipping into negative mode. Right now I am just happy with the scope, and I'm anxious for the biopsy results to come back so we can move forward. Maybe Sam will actually start talking and he can just tell me how he feels. That would be perfect!

I'm not sure where we stand now. Sam was doing so well after his two weeks on Prednisolone. Then about 5 days after taking him off of it, his skin was the worst I've ever seen it, he started not eating as well, getting sick, and then even threw up, which is not common for him anymore. He didn't eat for about a week, and then started to feel better. His brother came down with strep throat after Sam was sick, so I'm hoping maybe just a bug?? When I weighed him at Phenix's appointment, he had not lost any weight, surprisingly. He was even a few ounces heavier. Thank goodness, too! He started eating a ton again, and I felt much better about the situation. Then on Friday morning he woke up not breathing well. I took him in to the doctor, gave him a double dose of nebulizer, and then was told to take him to the hospital because it didn't help. So we spent the day at the ER, giving treatments that weren't helping, testing for RSV which was negative, and basically not knowing what else to do. We were about to be sent to Primary Children's for admission when they finally gave him a steroid, Prednisolone again, and that worked. We could go home.

His retractions are gone, but he still sounds wheezy to me. And they could never tell me why this all happened, whether it was asthma or a virus or what. He's not eating the best anymore, but hopefully he will feel better today. The sad thing is he is back under 20 lbs. I don't know when he lost it because he ate SO much food the few days before we went to the hospital, but Friday morning he was 19 lb 11 oz. Oh well. I did have to put back some of his one piece 6-12 month clothers that were too small. At least he's getting a bit taller I guess. His skin on the other hand a sad sight. His poor thumb looks like he scraped it on concrete. And the saddest is getting ice cream at the Daily Freeze for the 4th of July and he can't have any. My poor little Sammy.

This is the face of a 20 pounder!!

We hit a milestone...Sam is finally 20 lbs!!

Two weeks ago we woke up to rapid breathing and wheezing. Sam was having asthma problems, which have not been an issue before, and it was not something I was happy about since he has been on Flovent and should be "healthy" right now. So we went to the pediatrician for a breathing treatment, and while I was there I called my GI doctor. She said the Flovent is obviously not working, since he also has not gained any weight in the last month, and she prescribed him Prednisolone. It's a stronger liquid steriod that he was to take for two weeks, and tomorrow is the last day. So today I took him to check his weight, and he is exactly one pound heavier!

So today is a happy day. I'll be interested to see how it goes the next few weeks when he is not on a steriod, but hopefully he will continue to grow.

I will say another thing....he has suddenly become a ticklish little boy. I think that in itself is a sign that he is feeling better. :)

The official word.

I neglected to post on the biopsy results, and as expected they were positive for eosinophils. His numbers were 50, which is average I guess. Anything above 20 indicates EE. So for now my plan is to keep him on swallowed Flovent for a couple weeks to clear out the eosinophils in his esophagus, and continue the allergen-free diet for the top six offenders. Then we will scope again in three months. If the scope is clear, then we will start adding things one at a time. If it's not clean, then we will eliminate more foods, and maybe the dog...sadly....blood tests showed he is very allergic to the dog. They aren't sure how non-food allergens play a role, but cases of EE are worse in the fall and spring.

So that's where we are at. It may change as I read and learn more. My friend gave me the name of another doctor who is the expert on EE, and even taught at the school in Cincinnati (the leader in EE research) where my current allergist went to. And he just happens to live in Utah. My only concern is that Sam does not throw up hardly ever, so I don't know how I will know if he's getting better, or if a certain food we add is making him sick. Please comment if you have any suggestions!

Sam gets mac and cheese again...sort of...

I saw a recipe on the Gluten-Free Goddess for a cheesy uncheese sauce, and I wanted to try it for Sam. He loves mac and cheese. In fact, I felt so bad a couple days ago because I made some for Ethan and Phenix and tried to hide it from Sam, but he saw it and was so sad. I should say mad.

So tonight we had no-cheese sauce with quinoa noodles, chicken sausage, and peas and corn, and I think it was a pretty good meal for my little guy. He ate it all.

The Best Cheesy Uncheese Sauce

4 tablespoons light olive oil
5 tablespoons sweet rice flour
2 1/2 cups unsweetened plain hemp milk (or rice milk- but it's thinner, less creamy)
2 rounded tablespoons good tasting nutritional yeast
1/2 teaspoon sea salt, or more, to taste
A good dash or two of garlic powder to taste
A good dash or two of minced onion to taste
1/2 teaspoon gluten-free Dijon or honey mustard, or to taste
1 tablespoon golden balsamic vinegar, rice vinegar, or lemon juice- to taste
1/4 teaspoon nutmeg
1/2 teaspoon paprika (for orange) or turmeric (for yellow) color- may omit
1/4 cup white wine, to taste (Frey Organic is vegan/egg-free)

In a saucepan, heat the olive oil over medium heat, and stir in the rice flour (I like to use a whisk to do this). Cook and stir the flour for about 30 seconds- it will make thick paste- and continue stirring to cook the raw flour taste out of it.

Slowly add in the hemp milk, whisking to blend the flour paste and hemp milk.

Bring the mixture to a bubble (it will thicken as it heats) then reduce the heat to low. Add the nutritional yeast, sea salt, garlic and onion powder, mustard, vinegar, nutmeg, paprika or turmeric, wine (and sesame tahini, if using), and whisk to blend.

Continue heating and stirring the sauce over gentle heat for about five to ten minutes. Taste test. Does it need a hint more salt? Wine?

Stir and gently heat through.

Remove from heat and use on pasta, rice, potatoes, vegetables or casserole fillings.

Makes about three cups sauce.

Karina's Notes:

Originally I used rice milk in this recipe, but lately I have switched to hemp milk- gluten-free soy-free Hemp Dream - it's thicker and creamier, and rich with Omegas and calcium.

I added the salt and vinegar to my basic sauce recipe because- to me- it helps replicate the flavor found in Parmesan.

As for the mustard- I'm allergic to it, but I included it because I've always found that a dab of mustard really livens up a white or cheese sauce. If you're sensitive to mustard, leave it out and don't worry- it will still taste good.

I now add a tablespoon or two of toasted tahini paste (sesame butter) for added creaminess and depth. Allergic to sesame? Use almond butter or cashew butter.

Read more: http://glutenfreegoddess.blogspot.com/2007/12/cheesy-uncheese.html#ixzz0nCnTXeCC