LIVING

With EoE, Allergies, Asthma and a G-Tube

It Hit Harder Than I Expected.

This is long…

Gage has been trialing dairy. He had been begging to trial it. Our GI said okay, let’s just let him trial it and see what happens. The thing about dairy is it’s a huge trigger for the majority of EoE kids. The last time Gage had dairy he was 4. It was the very last thing we removed from his diet before he got his feeding tube.

Gage has had symptoms. He’s typically not symptomatic. He has had blood in his stool, his throat burns, chest pain, reflux, dark circles around his eyes… all signs he was failing. I only knew about the eyes and blood. He was keeping the other stuff from me, but told the GI doctor at our appointment. The thing about my boys is they don’t tell me these things unless it becomes unbearable. They’re tough kids. 20160128_080054A few days after the check up with GI Gage had his dairy trial scope. I knew it probably wouldn’t be good. After the scope the doctor came out with pictures as usual. He said it really hadn’t changed since his last scope, which was a fail. So I assumed dairy was a fail, but had hopes that maybe it was a low fail and it may be something he can have every now and then. He has so many Ige allergies it almost seems like we’re running out of options to trial. Ige allergies are separate from EoE triggers. They can sometimes cross paths, but if he’s having a reaction to a food he’s not going to trial it in fear of an anaphylactic reaction. 20160128_095525

Today the nurse called me with the results. Dairy is a huge fail for Gage. Eosinophil counts should be zero in the esophagus. Gage’s mid esophagus count was above 120, his lower esophagus was above 100. We will have to remove dairy for 6 weeks to let him heal and not add anything new in. We then need to decided if we want to wait 2 more weeks and scope him to make sure he is back at zero. We had removed rice, his first passed trial, because his numbers continued staying elevated. Which I think we will scope at 8 weeks. Then he will begin a lamb trial. With $5 strawberries and blueberries right now, along with $6 bags of shrimp and Tinleigh’s $5 chocolate chips why not add a super expensive meat. I may need a go fund me page just for our grocery bill. 20160128_100201

I am so sad for Gage. I don’t even want to pick him up from school today because I don’t want to tell him it’s a fail. Dairy was his dream food. He can’t have it, probably, for the rest of his life. This disease sucks. I can’t stop crying today. It’s rough on a mom. I know it’s him going through all of the scopes, skin prick testing, allergic reactions, pain from food trials, disappointment from failed scopes, it breaks my heart though to watch him endure all of this. It’s becoming harder and harder for me to stay positive for him, but I do.

This was a hard year for me. I’ve spent the last 6 years navigating this disease for 1, then 2, now 3 kids. I’ve learned so much about food, ingredients and have memorized so much. I’ve learned to keep them safe and taught them how to keep themselves safe. Crossing into 2015 I sort of took a step back and focused on myself for a bit. Something I hadn’t done in a long time. I chopped my hair off, got glasses that I had been avoiding for 10ish years, got myself into shape and started delegating jobs around the house so I didn’t feel so overwhelmed. It was the scopes in June that it hit me. I was feeling really good about life then I got the phone call that they had failed their scopes. I’ll never forget the feeling I had after that call. It hit me like a ton of bricks. Sort of like a back to reality hit. I cried and was really upset, more than I normally am. It really got me thinking and I’ve had a million conversations in my head the rest of the year.

I think I’ve entered the next phase of a mom with chronically ill children. The first phase was figuring everything out. Not it’s just a this is life, forever, phase. The reality is, it’s really sad. Do other moms like me go through these phases as well? It’s exhausting to think about. I don’t know why, but I feel really emotional now about the kids when it comes to EoE. Maybe my mind was so occupied before trying to figure everything out that I didn’t really see this lifelong disease for what it is. Now that I seem to have a lot more knowledge I can see the LONG road ahead of us. It seems like yesterday that Gage was diagnosed. It’s been 6 years. It flew by so fast.DSC03429

I’ll never forget the first few videos about EoE I watched in horror thinking that will never be my kid and we’re going to beat this. Boy was I wrong. Maybe that’s also part of why I feel the way I do now. I am exhausted from hearing blow after blow for them when it comes to more Ige allergies and more failed scopes. I know that’s how it’s always going to be. Today when I told Nathan about Gage’s scope results and how I just can’t quit crying for him he told me “Gage is strong. I need to get it (crying) out of my system and be strong again for him.” He also said “You are much stronger than you should be asked to be.” He’s right. That makes me wonder, maybe I’ve just held all the tears in for 6 years and I just can’t anymore. I don’t know. It feels like I’m somehow on the other side of things now looking in. Does that make sense? Maybe this seems silly to some for me to share all of these emotions, but there may be another mom out there wondering and feeling the same as I do. My blog has always been to help others stay positive and keep going. I have hopes to let other moms know, they’re not alone and that I’m not some wonder woman. I have feelings too. I’m going through my own journey as the kids face a chronic illness.

I do know that we will move forward as we always do. Gage and I will probably share some tears tonight. Tomorrow is a new day and this is our life. We will focus on something happy, like our upcoming vacation, and push the bad aside. Please lift Gage up in prayer that he has the strength to keep moving forward with a positive attitude. I know that God will give you, at times, more than you can handle. That’s when you lean on Him for guidance, strength and all you need.

Isaiah 26:4

Trust in the LORD forever, for the LORD, the LORD, is the Rock eternal.

If you have a $1 or two to spare, please donate in our name to CURED and help us find a cure so one day Gage, Charlie and Tinleigh can eat food again.

February 2, 2016 Posted by | Gage's allergies, LIVING | , , , , , , , , , | 7 Comments

Our EoE video

I’ve been wanting to do a video for a few years now and have never found the time to do it. Even now I’m typing one handed and feeding Layton. I stayed up until 2am last night after the kids went to bed and got a video made!! Then of course I had issues converting it and uploading it.

Here it is! It shares a quick glimpse of our journey with EoE from January 2010 until today.

EOE

May 23, 2014 Posted by | LIVING | , , , , , , , , , , , , , , , | 1 Comment

School!!!

Both boys are successfully back in school. *big exhale* I could really use the little break, but at the same time if I don’t stay busy then I end up worrying about them all day.

This year things are a little different. Charlie knows the ropes and feels confident about staying safe. Gage’s pre-school has gone PEANUT FREE! Oh happy day!  Granted he’s still got 20+ other allergens he needs to stay away from but the nuts are what got us into trouble last year and I don’t want to revisit that, or worse. Just knowing the other kids won’t be having nutter butter cookies, crackers and peanut butter or bringing in a peanut butter sandwich just makes me smile. I actually smile when I think about that.

Breakfast: Gage oatmeal (cooked millet grain with sugar) and hot cocoa (coconut milk and homemade chocolate syrup warmed up)

Breakfast: oatmeal and hot cocoa (carnation instant breakfast and milk warmed up)

Don’t ask me what was wrong with Gage. Just right at that second he decided he wasn’t happy and wasn’t going to smile.

After comparing to last years pictures I realized they each grew one brick taller!

Both became a bit more handsome. 🙂

Little Miss doesn’t enjoy me waking her up on school mornings.

She’s happy to ride along though.

For all of you allergy parents and kids of special needs

“Here’s to a wonderful, uneventful and educational school year!”

September 5, 2012 Posted by | Charlie's allergies, Gage's allergies, LIVING | , , , , , , , , | Leave a comment

6 Weeks

We met with the GI doctor. sigh  We’ve come to the conclusion Gage is just a very allergic kid. Since we haven’t found his trigger his body is just overreacting to everything he seems to eat a lot of. That is why he’s showing an allergy now to millet, sorghum and chicken. Gage is also still growing. He recently had another growth spurt and is on the upper side of the growth scale. The combo of those two facts have put us face to face with two choices.
1. We give his diet one more change removing the newly positive foods PLUS dairy.
2. We go ahead and put in a feeding tube.
We have the best GI doctor. She asked me if we wanted to make the decision or if we couldn’t she would do it for us. I expressed that Nathan and I had spoken all week about what we wanted to do with Gage. We knew in the back of our minds what was coming but we never said it to each other. We only spoke about the choices we would make in changing his diet. So I let the doctor know we wanted to give it one more go around before calling it quits. I can’t in my heart just do the tube if I feel like I can try one more change. I have to know I’ve done everything I can for him. Gage’s esophagus is at a point where we start risking him stricturing shut. So our game plan is to change his diet and scope again in 6 weeks. He won’t be completely healed by then but we will be able to tell if there’s improvement at that time. If there is no improvement then it’s time to put the feeding tube in.
So Gage’s new list of do not eat foods are:
beef – along with anything containing gelatin
chicken/turkey
eggs
wheat
rice
oats
sesame
corn
millet
sorghum
potato
sweet potato
soy
celery
mustard
tree nuts
peanuts
fish
shellfish
pea
dairy
buckwheat
coconut – tested low but we’ll use it sparingly for baking. I don’t think I would risk letting him drink it daily and his body starting to highly reject it
apple is in the blood test and possibly may get taken out
We are still waiting on the final word from the GI doctor for the blood test we had done. Chicken was a low positive and we didn’t skin prick for rice or oats so those were in the blood test as well. I highly doubt we can add rice in but it would be a huge help.
We’ve made it through the weekend ok. It’s going to be a tough 6 weeks, but hopefully worth it. The big thing in our house is the boys have hot cocoa every morning. It’s basically milk with hershey’s syrup or carnation instant breakfast warmed up in the microwave. They drink it religiously like I drink coffee. So we had a talk why he can’t have it. He told Charlie immediately that it wasn’t fair for him to drink it if he didn’t get to. So I’m now on a panicked search to find him some hot cocoa. There isn’t really a replacement milk we can use. Coconut, occasionally with risk. Goat’s milk we don’t want to risk since he’s so allergic to beef and broke out in hives when he ate deer. We would really have to test him on something like hemp before giving it to him.  Charlie and I had a talk and Charlie told me right away he would go hide in the basement to drink his hot cocoa. I laughed a little. He won’t give it up, but he’ll figure out how he can still have it and make everyone happy. So for the last two days he’s drank it in the bathroom.
I attempted pancakes for Gage Sunday morning. By noon I had “donuts” ready. Lot’s of tears and ruined batches of goo but I came out with a winner and they both at them right up! Phew! Keep an eye out for the “I’m allergic to everything donuts”.
I have noticed in just a short 36 hours of being off of dairy that the dark circles that are always around Gage’s eyes are gone. I do hope it correlates to what’s going on inside as well!

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August 26, 2012 Posted by | Gage's allergies, LIVING | , , , , , , , , , | 4 Comments

Savory, but not saveable

I got excited when I found a cracker recipe for Gage. I found it on whole living daily. A site i’ve recently come across and have found a number of recipes I can use. The crackers are called Addictive, Savory Allergy Free (GFCF) Cheddar Crackers. I would love to feed Gage a flavored snack cracker rather then his cardboard rye crackers. Which, he loves, but he’s 3 and deserves yummy snack crackers like every other kid.
Let’s get started.
Makes 2 dozen 1 ½-inch crackers

1/2 cup + 2 Tablespoons Authentic Foods GF Classical Blend or my Basic Gluten-Free Flour Mix – I used Bob’s Red Mill baking flour mix
2 Tablespoons sorghum flour
2 Tablespoons golden flaxseed meal
¼ teaspoon xanthan gum
¼ teaspoon baking soda
¼ teaspoon salt
Pinch cayenne pepper
1/8 teaspoon garlic powder
1/8 teaspoon onion powder
¼ cup + 1 Tablespoon dairy-free, soy-free vegetable shortening – I used crisco
1 ½ teaspoons light agave nectar
1 Tablespoon + 1 teaspoon rice milk – I used regular milk
¼ cup Daiya “Cheddar” Cheese – I used regular cheese

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Pre-heat the oven to 325 and line a cookie sheet with parchment paper.

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Whisk flour mix, sorghum flour, flaxseed meal, xanthan gum, baking soda, salt, and spices. I used Bob’s Red mill baking mix for my flour mixture. I do NOT advise this and I’ll tell you why in a minute.

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She had written the recipe so that you cream the vegetable  shortening and agave nectar then add it to the flour mixture. I read it wrong and dumped it right into the flour. Still came out the same. I was also suppose to use a stand mixer with a paddle. I don’t have either. I would LOVE a stand mixer. I would also love a dehydrator, new large food processor and bread maker. Shoot, let’s go ahead and throw in a new camera while i’m at it.

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Roll the dough into a ball with your hands. Then smash the ball on a piece of parchment paper into a disc. Then place another sheet of parchment paper on top and roll the dough with a rolling pin until it’s an 1/8″ thick.

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Once the dough is rolled start cutting the circles. They should be between 1-1/2″ and 2″ big. I ended up using the cap from a spice jar. Move the circles to the cookie sheet with parchment paper on it. Jab each circle with a fork 3 times.

imagePop them in the oven and bake for about 18 minutes until you can smell them and they’re golden brown. When you remove them let them sit on the cookie sheet for 5 minutes before moving them to a cooling rack.

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Once they’ve cooled find your taste tester.
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My tester loved them and went for more.
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However, as he chewed he changed his mind.

So I grabbed a cracker and tried it. At first they did taste good. Then as you chew you get the real flavor, beans. I shouldn’t have used the Bob’s Red Mill flour mix for these. They were gross, so we ended up feeding them to the birds. I am going to attempt them again, but with millet instead. The original recipe calls for a rice flour mixture but Gage can’t have rice.

I’ll get this recipe figured out!

April 30, 2012 Posted by | Gage's allergies, LIVING | , , , , , | Leave a comment

Millet time

I’ve had a bag of millet grain for quite some time. I have never cooked with it and really didn’t know what to do with it, until now. A friend recently posted a quinoa oatmeal type recipe and I gave it a go with millet. It was supposed to be like a breakfast oatmeal. Gage use to love oatmeal. Charlie eats Quaker oats now and Gage drools as he watches him eat it. I hate that.

This morning, things were going to change. Gage was going to get his oatmeal.

I pulled out the millet and measured 1/4 cup.

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I poured it in a pot and added 1/4 cup water and 1/4 cup milk.

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I brought that to a boil.

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I then reduced the heat to medium low and put a lid on it. I cooked it until all the liquid was absorbed.
Once it was done I made 3 small piles on a plate. image
I wanted to make sure it tasted yummy how Gage wanted it to taste. One pile we added cinnamon and sugar, the 2nd pile honey and the 3rd maple syrup. He decided he loved the maple syrup with a little bit of cinnamon and sugar in it. That’s a lot of sugar but millet is super healthy so i figured it would balance out.

Gage loved his oatmeal. He asked if I had more for him to make the next day. I assured him we had a whole bag.
Every funky food made that Gage loves is a small victory. I felt so happy I found something he thought was oatmeal like.
Later I caught him in the kitchen sneaking millet straight from the bag. I asked him what he was doing. He replied “eating my oatmeal”.
I thanked my friend today for posting the quinoa recipe. I did not follow the recipe at all but it got my brain thinking of other millet dishes I can make for Gage.

April 27, 2012 Posted by | Gage's allergies, LIVING | , , , , , , | 1 Comment

No bake cookies

When I was in high school I remember so vividly my brother would make up a batch of no-bake cookies, give me one and then eat the entire batch himself. I loved no bake cookies. Nathan loves them too and asked for some recently.

I immediately pulled out the recipe card and was excited because Charlie can eat oatmeal and loves chocolate. I knew they would be a hit with him too!

First step: Occupy baby

After baby is set get out everything you need:

1 cup sugar

3T cocoa

1/4 cup milk

1/4 cup margarine

1/8 tsp salt

Cook on high till rolling boil, then cook 1 minute longer. Remove from heat.

Here’s where I made it allergy friendly for us.

1/4 cup SUNBUTTER

1-1/4 cup oatmeal (puffed millet)

1/2 tsp vanilla

You’re suppose to mix the remaining ingredients in once you remove it from the heat. At this point I added the Sunbutter and vanilla and mixed. Then I separated the mixture in half into two bowls. One bowl I added a little over a 1/2 cup of oatmeal and the other bowl I added puffed millet.

You then drop by spoonful onto wax paper and refrigerate until firm. They turned out great. The Sunbutter does change the flavor a little bit. Next time I won’t use quite as much Sunbutter, the flavor is strong in these cookies.

Gage thought his millet version was awesome!

Didn’t get a picture of Charlie eating his but he ate two right away!

April 18, 2012 Posted by | Charlie's allergies, Gage's allergies, LIVING | , , , , , | Leave a comment

Feeding Tube Bride

What has this world come to. Oh the numerous ways to lose weight.

What ever happened to good old-fashioned exercise and eating in moderation?

In this fast paced world of I want it right now, that’s what dieting has turned to. I’m not talking about liposuction. People are actually using feeding tubes to lose weight.

When my husband first brought this article to my attention I immediately became furious. One of the many scary things about an Eosinophilic disease is that you can at any point end up on a feeding tube. Take a minute to think about putting a feeding tube in your child. Doesn’t matter if they’re 2 years old or 14 years old, with an eosinophilic disease it could happen at any age. Now, how hard do you think it would be to eat a meal in front of your child? What about every day activities? How about telling them they can’t eat anything for the next 6 months. Not something you want to think about is it?

Please read about real kids with feeding tubes.

Feeding tubes.

Now, here is the article about brides using feeding tubes.

Brides.

Please tell me why people are doing this? It’s sick.

I hope the women and men using this method of diet are made aware of others needing feeding tubes for real purposes. I hope they watch the CURED video.

Just use you’re head.

If you eat too much you’re going to be fat.

If you don’t exercise to keep your body healthy it’s not going to be healthy.

Eat in moderation and go for a walk!

April 17, 2012 Posted by | LIVING | , , , , , , , | Leave a comment

Lunch

School is coming to an end and new creative lunches are getting harder to come up with.

Here are a few days worth of lunches I pack for Charlie.

Who’s got some ideas I can use?

Tortilla warmed then wrapped around a stick of cheese, cherries, Fruit Gushers, Pringles and a juice.

Sliced up pancake, cool whip for dipping, kiwi, pudding, cheese stick and juice.

Turkey and cheese sandwich, coconut marshmallows, Fruit Gushers, frozen Go-gurt and juice.

Cheese sandwich, Pringles, frozen Go-gurt, black olives and juice.

It’s actually cheaper for him to drink a juice box rather than buying milk! He does on occasion get to buy a milk, which he thinks is super cool. He’s not a huge fruit eater and won’t drink juice at home so this is usually the only way for me to get some in him.

So what are some things you pack? All ideas welcome!

April 11, 2012 Posted by | Charlie's allergies, daily life, LIVING | , , , , , , , , , , , , | Leave a comment

Allergy Baking Tips

When trying new recipes that are allergy friendly there are a few things I like to do.
1. Cut the recipe in half when making it for the first time. This saves on expensive flours, especially if it doesn’t turn out or isn’t as yummy as you hoped.
2. If the recipe turns out good wrap some up and throw it in the freezer to see how well it freezes. This way you’ll know if it’s something that has to be eaten fresh.
3. If the baked good does freeze well make a huge batch and freeze it! It’s hard having things to grab and eat when you have allergies. I keep Gage’s pizza crust, bread, pancakes and even cupcakes in the freezer at all times. Need a quick dinner? Make a pizza. Running out the door in the morning? I grab him a chocolate chip pancake to eat in the car. Invited to a birthday party? You already have a special cupcake in the freezer ready to go, it just needs icing. Things like that make dealing with allergies seem like you have a “normal” life.
4. Make sure when you freeze any allergy friendly foods you write the ingredients on the bag. This way if their allergies change and it’s something you haven’t made in a while you’ll know exactly what’s in it.

Just a few ideas to toss your way. Hopefully they help make your allergy life a little easier so you can get out there and keep LIVING!

What are some things you do to make allergy meals easier?

February 6, 2012 Posted by | daily life, LIVING | , , , | Leave a comment

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