LIVING

With EoE, Allergies, Asthma and a G-Tube

Scopes x4

We scheduled all four kids to be scoped on the same day. Our crew filled the 4 spots the hospital would do that day.

The night before we made the 3 hour drive to the hotel. We set up a formula bar.camera 081Fed everyone a snack and attempted to settle in for the night. IMG_0724Layton luckily went right to sleep in her pack’n’play. Tinleigh slept with mom and I. Nathan and the boys took the pull out couch. I think Nathan got the short end of the stick as I noticed Gage basically slept on top of him all night.

We had to get up bright and early. I tried to keep track of the times things happened and do a blog post that way, it ended up too crazy for me to keep going back to log things in.

Here’s as far as I got

4:30am up and at em
4:37 i put my makeup on by the light of the microwavecamera 090
4:45 mom broke her diamond necklace in the dark hotel room and the diamond flew off
5:00 woke up kids
5:15 found missing diamond
5:30 headed to hospital
5:50 checked in all 4 kidscamera 099
6:20 got called back to our roomphoto 2
7:15 Layton got loopy medscamera 098
7:35 Layton went back
8:05 Tinleigh got loopy meds
8:10 Laytons done
Tinleigh went back
Gage got meds
9:07 Gage went back

After this I wasn’t able to keep a log. Once Gage went back Layton came out. Mom and I headed down to be with her and could hear her yelling as we rounded the corner. I knew I had another little Tinleigh on my hands. We walked into her curtain area where one of the nurses was trying to hold her as she screamed and tried to wiggle away. She was fired up. I noticed something in her mouth. I quickly asked what it was. The nurse said a goldfish cracker. WHAT?! I said don’t those have dairy in them? I don’t usually buy them because my other kids are allergic to them. The nurse looked at me and said no it’s just wheat. We scooped the cracker out of her mouth anyways, they handed her to me and then they all left. I grabbed the bag of crackers and sure enough there’s milk in the crackers. I looked down at Layton and right there around her ankle is her little allergy bracelet with one work on it: MILK. I was pissed and nervous all at the same time. I was trying to calm her down, watch for any signs of a reaction and trying to figure out in my head how to handle this situation with the nurses. Her regular nurse came in and I told her in a calm manner the crackers do have milk in them. I then told her if this would have been Tinleigh she would be having an anaphylactic reaction. The nurse went and said something to the pacu nurses about their mistake. I left it at that. Luckily Layton was fine. I called the patient advocate line the next day and took care of the situation. photo 5I then asked the nurse for a glucose bottle for Layton in hopes it would calm her. That’s what always worked for Tinleigh. Sure enough it worked for Layton as well. Layton didn’t like the heart monitors, her IV or the blood pressure cuff. She just wanted it all off. So we keep giving her little bottles of water and turned on the tv. I was able to keep her a little more calm until it was time to unhook her from everything. Once she was finally calm Tinleigh came rolling into our recovery bay. photo 4Tinleigh has a history of waking up crazy mad. The doctor now gives her a little something to calm her down. It works like a charm. She woke up happy and mellow this time. She saw Layton’s little bottle and instantly wanted one too. She may be 3-1/2 but if it keeps her happy then so be it. We entertained the girls for a while and then Gage came out. photo 3We propped him up in a chair and he was quiet and content. Didn’t want bothered only wanted some sprite. Layton was starting to want to run around by this point. So we found a wagon and took the girls for rides up and down the hall. It was still early in the morning and we were the only ones in the whole recovery area. photo 1(1)Finally Charlie came out. We propped him up in a chair as well.camera 171They boys sat drinking sprite and watching tv.  No one got sick. No one threw a fit, except Layton. It was a good day for scopes. The doctor came and spoke to us once everyone was done. Everything appeared good in each of them. Tinleigh had one little spot that looked like small ulcer so they biopsied it. Other than that all the inflammation was down. We know not to get our hopes up because that doesn’t always mean they’re eosinophil clear but it is a good sign that things could be better. We left the hospital by 12:30. We were all exhausted but it was over, we did it.

Friday afternoon I got a call from the doctor. Results were in. I felt numb. She asked who I wanted first. Layton of course! Guess what Layton scoped clear! She may also start on dairy. I couldn’t believe my ears. I think I’m still in shock. Does this mean she’s cleared for life? No, not really. She is on all food at this point in time and is scoping clear. It could flare in the future. We’ll pray that she doesn’t. Charlie was 4 before he started having issues and he was on a regular diet until that point. Let’s think positive though. IMG_0737Next up were Charlie’s results. He was clear all the way through. There were no more eosinophils in his belly either. We had removed soy and started him on reflux medication. The eosionphils in his lower esophagus were gone also. So we will keep him on the meds and off of soy going forward. Even though he doesn’t show any allergic reactions to soy his skin and blood test for soy are huge. So in this case allergy testing does work for him trying to figure out EoE. Charlie is going to trial beef next. He hasn’t had beef since he was 4 and that was the food that set everything into action for him as far as allergies and EoE go. He can only eat pork and fish right now and really needs another protein. Chicken is a trigger and he keeps testing positive to shellfish so beef it is. Fingers crossed he doesn’t have an allergic reaction. camera 039

Gage’s scope was better. All of his inflammation and furrowing were gone. So the removal of corn helped clear things up. However, he was still showing 10/12 eosinophils in some areas. Gage has always had a lower number of eosiophils since having a feeding tube. The highest it’s ever been though is a 9. We don’t want to see these numbers in a steady climb. Cauliflower was the only thing he was trialing. I mentioned to our doctor he has been complaining of his throat burning. So we are going to let Gage keep cauliflower and start him on reflux meds. We are hoping maybe he has some reflux going on and this is why he’s showing low numbers of eosinophils. We will let him take the meds for 2 weeks before letting him start a new trial. His new trial will be broccoli and watermelon. We will scope him at the end of July. photo 1

Tinleigh failed her food trial this time around. Although she didn’t have any visual signs of EoE her numbers were 10/20. So we have to remove bananas and squash from her diet. The doctor is letting Tinleigh keep Enjoy Life Chocolate chips because they are just cocoa. We are going to pull these 2 foods from her diet for two weeks then she will trial oranges and sweet potatoes. Tinleigh will get scoped at the same time as Gage.

For both Tinleigh and Gage if they have high numbers at their next scope we will have to dial things back and get them to a clear scope before we can continue to move forwards. So i’m really praying things straighten out for them these next two months.

We’re very happy with how things are going for the kids.  A little sad Tinleigh has to take away bananas and squash but she still gets to move forward. It’s all just part of how crazy this disease is.

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May 30, 2015 Posted by | LIVING | , , , , , , , , , , , , , , , | 1 Comment

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

Please help us find a cure

You are just a few clicks away from helping my kids one day be able to go to birthdays and eat what the other kids are eating.

One click away from my kids going out for breakfast on their birthday.

One click away from going to the movies and buying a treat.

One click away from a family vacation, which is virtually impossible unless i pack an entire trailer of food.

One click away from my kids going to the dairy bar or getting a treat from the ice cream truck.

One click away from me not having to pack a duffel bag of food every time we leave the house for more than a few hours.

I think most importantly, one click away from me cooking one dinner for my family that we can all sit down and enjoy together.

You’re also one click away from helping many families put an end to the staggering grocery bills.

One click away from helping end the outrageous hospital bills that are never ending because of the maintenance of this disease.

Please help us find a cure.

Forgo you’re expensive coffee tomorrow and donate that money to CURED.

Donate what your family would spend when you go out to dinner.

Donate the cost of the candy your child picks out in the grocery line that mine can’t eat.

Donate $1.

Every little amount helps my kids come closer to one day being able to eat a normal healthy diet.

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May 19, 2014 Posted by | LIVING | , , , , , , | 2 Comments

Lasagna for all – wheat free

With baby coming very soon, along with our parents coming to stay at different times, I decided I better get at least one meal ready for their visit. I have some frozen meals ready in the freezer for us, but not enough for company.  What could I make in bulk that would feed us and our parents when each set comes to visit, lasagna! The good thing about this meal is that putting one together for the boys is just as easy as the regular one. Technically, Charlie can eat the regular one.

First thing is getting the sauce started. We had a large amount of tomatoes we turned to sauce and froze this summer so I started with about 2 cups of sauce.
To the sauce I add:
1TBS parsley
2 tsp salt
1 tsp sugar
1 tsp garlic powder
1/2 tsp pepper
1/2 tsp oregano
I usually let that simmer as long as I can.
Next I cook up some corn noodles. They don’t make lasagna shaped corn noodles, or at least I haven’t found any. I used elbow noodles today.
While the noodles are boiling I brown up some ground turkey.

That’s all the cooking, time to start layering.
I first put a layer of sauce on the bottom.

Next I do a layer of noodles. I then spread a layer of cottage cheese on top. Nathan doesn’t like ricotta so I use cottage cheese instead. No sense in buying two containers of different cheeses, Gage gets cottage cheese too. I then sprinkle on some parmesan and mozzarella. Finally, some meat then more sauce. I repeat this one more time then top it off with noodles then sauce.
Gage’s was smaller than a normal size lasagna so I baked it for 30 min at 350 degrees. Usually the last 10 min I add more mozzarella for extra cheesy goodness. Today I didn’t since this lasagna is going into the deep freezer. Now when we have company all I’ll have to do is thaw it and warm it up in the oven topped with cheese.
Now I need one more big meal……..

September 28, 2011 Posted by | Gage's allergies, LIVING, What's for dinner | , , , , , , , | Leave a comment

Best pancakes ever – wheat free

We finally found the perfect pancake recipe for Gage. It’s an original that we adapted from another one we found.

Perfect Wheat Free Pancakes
3/4 cup millet
1/4 cup tapioca starch flour
1/3 cup sugar
1tsp baking powder
1tsp baking soda
1/2 tsp salt
1/2tsp xanthum gum
1 cup milk
3TB melted butter

Mix all dry ingredients together.
In a separate bowl mix all wet ingrediants together.
Slowly add wet to dry while mixing. You may not use all the wet mix.
It becomes somewhat stiff due to the xanthum gum.
I cook them on a griddle. They really puff up, so cook them on low.
Add fruit or chocolate chips!

image

I made some this weekend and Gage ate three right away. No syrup or butter. They almost have a cookie taste. I then put them in the freezer or fridge. They last a 3-4 days in the fridge. I just warm them up in the toaster from the fridge. From the freezer microwave them for 5-10 seconds then toast it in the toaster.
ENJOY!

September 26, 2011 Posted by | Gage's allergies, LIVING | , , , , , , , | Leave a comment

The Final Clinic Day

As we head off to the see the three doctors I was anxious. Not knowing what the results would be I felt out of control.

We see the allergist first who looks at their backs again. Gage went first. Gage showed a reaction to soy and peanut. He showed an irritant to barley, quinoa, ham and green beans. So I start in with my questions. For instance: Gage was off of wheat and oats, had a clear scope, we added wheat and oats to his diet and at his next scope he was horribly inflamed with the highest eosinophil count he’s ever had. Why isn’t wheat or oats showing up? The doctor explained that it could have been one of the other foods he is eating that he showed an irritant to like pork. He also explained that the prick test and blood test have nothing to do with the patch test. Gage is possibly allergic to all the foods he tested positive to on the prick test. The foods that showed up on the patch test are the ones that are effecting his esophagus and his body isn’t necessarily allergic to them. Holy crap this is all crazy. So basically we now have two food lists for each of the boys. An actual allergic reaction list and a list that effects their Eosinophilic Esophagitis.

Let’s move onto Charlie.

The doctor read Charlie’s back then explained his findings to me. He said Charlie’s back had really changed from the day before. I knew this wasn’t good. Charlie’s positives are milk, wheat, barley, quinoa and carrot. Charlie heard the doctor say carrot and he got so excited. He hates carrots. I on the other hand want to crawl out of the room hearing wheat and milk. The doctor told me that milk is a tough one to test. If a kids tests positive to milk on the patch test then that means it really must be bad. I held my shit together, the day wasn’t over and we might not have to give them up. So with that all done the allergy doctor calls the GI doctor as we’re walking to her office to talk about what he had found.

The GI doctor admitted we had her a tad stumped since we were such a freak family with allergies. She was very nice and wanted to keep things easy for me. I had told her on the very first day no way would we ever do the elemental diet, where the boys are only on a drink and no food, so she was going to work through this with me. We first talk about Gage. Then jump to Charlie. It sort of kept going back and forth. Having a long list of actual food allergies along with these new foods made it hard. Gage for instance can’t eat wheat and eats a lot of quinoa as a grain. However, he tested quinoa as an irritant to his esophagus. She was also concerned about Gage because in his last scope he is showing signs of his esophagus becoming hard with scar tissue like Nathan has. We want to avoid that at all costs. She said because he was on the steroid at the time of the scope that really worried her. He should not have been so inflamed. So we decided that even though pork is a huge food for Gage we will remove it along with the other new foods. We will also take him off his steroid and scope him December 1st. She wanted to do it in 6 weeks but I told her no way would I be in the right state of mind for a big scope day with a new-born. I am very sad to remove pork from Gage’s diet. He’s loved bacon from the day he could chew it up. That and sausage links. We’ve tried turkey bacon but he doesn’t care for it.

Gage’s lists.

Food allergies: soy, peanut, beef, celery, mustard, wheat, rice, oat, sesame, peas, fish, shellfish, tree nuts, peanuts, eggs and potatoes. We did not put egg on the patch test because he is anaphylactic to it and is already off of it.

Eosinophilic Esophagitis irritants: soy, peanut, barley, quinoa, pork and green beans.

Charlie was a tough one to talk about. I expressed my strong feelings about removing wheat and milk. She totally agreed but told me that even though he’s had clear scopes the steroids might be masking the real results. The milk and wheat might be why Charlie is doing the constant clearing of his throat after he eats. We’re taking Charlie off the steroids and see what happens. She gave me the choice to go ahead and remove all his new foods or keep him on them. I chose to keep him on them. I knew with this new baby arriving soon I wouldn’t have it in me to be keeping things straight. I have frozen meals ready and no way am I redoing everything! Charlie will also be scoped December 1st. If Charlie is inflamed then we will remove (gulp) milk, wheat, barley, quinoa and carrot.

Charlie’s food allergy list: Beef, eggs, soy, rice, tree nuts, peanuts, all melon, celery, pea, pineapple, fish and some shellfish. He recently had lobster and that one was fine.

So after we had our game plan my thought was what if they both have clear scopes? How do we go about adding foods back? Do we start with the foods that effect their esophagus or do we start with foods that they tested positive to in the prick test. We’ve been adding food back for Charlie and he’s doing awesome. I think we’re up to 10 foods back in his diet. She said let’s just wait and see what happens because she wasn’t completely sure which route to take.

She then informed me that she wanted a blood draw on both of them to check for a few things. OH FUDGE! We keep them trapped in little rooms for 4 hours and now you want to take their blood. Shoot me now. I instantly felt super hot and dizzy. So down we go to the lab. They had not been in this particular lab before but as soon as they walked in the little room with “The Chair” they both turned to tears. Mom why are we in here? What are we doing? Can we just leave? I was silent. I couldn’t even bring myself to tell them. So I sat down and held them as they cried. They knew what was coming. Charlie then hid behind the table as Gage wept in my lap. The girl walks in and I mouthed “This is going to be horrible” She then realized Charlie was behind the table and I could see in her face the look of oh no. I scooped up Gage and we went to the chair. He cried and told me no over and over. He didn’t fight me though. We got it done and he got a sticker. He was still upset though because Charlie was crying out loud the whole time Gage was doing it and I know Gage felt bad that Charlie had to go next. When we do Charlie it always takes a few extra people. However, it was the end of the day and she was the only one left. So I had to get him out from behind the table. I tried the whole bribe thing, which didn’t work, and I had to put on the stern mom voice. Which I hate doing when I know he’s so upset. I finally got a hold of his hands and feet and slide him out. I scooped him up keeping his legs in the air away from my belly.  He is at this point screaming. I quickly sit down and she puts the arm rests down hoping to hold him in. Just then the door opened. Apparently while I was trying to get him out she called for back up. So the new nurse asked to hold him and I was fine with that. She gets him on her lap and he freaks out more. “I want my mom to hold me!” The nurse told him we would do that but he had to promise not to hurt my tummy. He agreed. So we switched again. I wrapped one of my legs around both of his and she held his other arm. He is just screaming and trying to get away. The needle nurse wastes no time and just gets it done. I think I forgot to thank her for doing that and not trying to make it better. It was horrible but it was over. I finally look over at Gage who is just so worked up after watching his big brother go through that. Just then super nurse showed them the treasure chest. So sucking up tears and their breath they both dug until they found the most wonderful plastic little toy. I wanted to just lay down and take a nap.

Now that the boys are off their steroid I am worried about how the next few months will go. We don’t even know if Gage’s esophagus is still inflamed. If it is we run the risk of it becoming completely swollen shut and the risk of food impacting. Keeping Charlie on the foods he showed positive to in the patch test could do the same to him since he’s not on his steroid. So I’ll have my eagle eye on them every time they’re eating these next few months.

Overall I’m pleased that we did this. A bit bummed with the results. We have to do what it takes to keep them healthy and I will still remain super mom in the kitchen!

Sure could use a glass of wine!

September 16, 2011 Posted by | Charlie's allergies, Gage's allergies, LIVING | , , , , , , | 2 Comments

Allergy Friendly Pasta Salad

I tried to think of something that reminded me of summer to make for the boys. Pasta salad!

I baked two chicken tenderloins in italian dressing until done. Then I chopped them into bite size chunks.

I chopped up cucumber, green pepper, cherry tomatoes, mozzarella cheese sticks and shredded some carrot.

I cooked up two different types of noodles, corn for Gage and wheat for Charlie.

Then I just tossed everything together, making sure not to mix up the noodles.

September 2, 2011 Posted by | Charlie's allergies, Gage's allergies, LIVING, What's for dinner | , , , , , , , , , , , , | 2 Comments

Polenta and Sausage

I’ve been wanting to try out polenta and I found the perfect recipe.

Polenta with Italian Sausage

4 cups water, divided

1 cup cornmeal

1tsp salt

1lb Italian sausage links

2 garlic cloves, minced

1 can (14-1/2oz) Italian stewed tomatoes

2TB minced frash parsely

1/4 cup shredded parmesan cheese

Combine 1 cup water and cornmeal in a small bowl. Bring remaining water and salt to a boil. Slowly stir in cornmeal mixture. Reduce heat; cook for 15 minutes, stirring frequently.

In a large skillet, cook the sausage and garlic over medium heat until sausage is no longer pink; drain. Cool slightly. Cut sausage into 1-in. pieces; return to skillet. Add the tomatoes, tomato paste and parsley; bring to a boil. Remove from the heat.

Spread half of the cornmeal mixture in a serving dish; top with half of the sausage mixture. Repeat layers. Sprinkle with the parmesan cheese. The boys started eating and seemed to enjoy it. Then they started telling me the sausage was too spicey and was burning their tongues. So next time I’m thinking I’ll just use ground pork in the sauce. I need to find some other things to do with polenta – suggestions?

August 30, 2011 Posted by | Charlie's allergies, Gage's allergies, LIVING, What's for dinner | , , , , , , , , | Leave a comment

Polish Kraut and Apples – slow cooker

Made a super easy dinner for Nathan. I love slow cookers!

Polish Kraut and Apples

1 can (14oz sauerkraut)

1 package (16oz) smoked polish sausage, cut into chunks. I used a beef sausage.

3 medium tart apples, peeled and cut into eighths

1/2 cup packed brown sugar

1/2 tsp caraway seeds, optional

1/8 teaspoon pepper

3/4 cup apple juice

I was only making this for Nathan so I cut everything in half.

Place the sauerkraut in an ungreased slow cooker. Top with meat, apples, brown sugar, caraway seeds if desired and pepper. Top with remaining sauerkraut.Then pour the apple juice over all. Cover and cook on low for 4-5 hours or until apples are tender.

Nathan thought it was wonderful. He said I could put it on the menu again.

August 29, 2011 Posted by | LIVING, Nathan's allergies, What's for dinner | , , , , , , , , , , , | Leave a comment

Banana Ice Cream

I often have friends send me links to great kid food ideas, here’s one of them!

http://confident-beautiful-motivated.tumblr.com/post/4418288504/rouxeats-chocolate-banana-ice-cream-freeze-a

If you don’t feel like clicking here’s the recipe

Chocolate-Banana “Ice Cream”

Freeze a banana, then combine with 2 tbsp cocoa powder and blend until smooth and creamy. Dairy-free, 110 calories.

I used bananas I had frozen for weeks. I made two batches for two boys, that’s why two bananas. Cut up banana and put in food processor with cocoa. At the last minute I swapped out the cocoa for  carnation instant breakfast to get some extra good stuff into their bodies. I thought this was the best stuff ever. The boys didn’t care for it so much. So I dumped it in a cup and added milk. They drank it right now. Whatever works I guess.

August 26, 2011 Posted by | Charlie's allergies, Gage's allergies, LIVING, What's for dinner | , , , , , , , , , | Leave a comment

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