LIVING

With EoE, Allergies, Asthma and a G-Tube

NEAW – eat like us for a day!

It’s eat like us for a day! Just try to, I dare you!

Pick one person or try to avoid all the foods.

Gage: Beef, eggs, soy, rice, all seafood, all nuts, peas, all potatoes, mustard, celery, and sesame (he has the easiest list)

Charlie: Beef, eggs, soy, rice, sesame, all seafood, all nuts, all melon, mustard, pea, pineapple, green beans, all beans, celery.

Nathan: Chicken, eggs, hops, fish, all nuts, all melon, turkey, pineapple, milk clams, oranges, apples, bananas, mushroom, peaches, pears.

OK good luck. Let me know what you come up with! I can always use new ideas.

May 20, 2011 Posted by | Charlie's allergies, daily life, Gage's allergies, Nathan's allergies | , , | 1 Comment

It’s airborne

I couldn’t sleep last night and started thinking about what the doctor had said that maybe Charlie’s EE is caused by an aeroallergen. I think he might just be right. Charlie started this cough/clearing of the throat thing over the last few months. It was this exact time last year that he started having problems and was diagnosed! Then I started thinking about Nathan. When I first met Nathan he would say that he was deathly allergic to poultry and fish and that he could only eat pork as long as his seasonal allergies weren’t bothering him. DING!  It has to be more airborne related for my family. I can’t wait to find out the results of this new blood test and get the scope results back. If we know that Charlie is going to flare up only during a certain time of the year we could treat it a little stronger and maybe keep it under control. Wouldn’t that be awesome!

May 19, 2011 Posted by | Charlie's allergies, Nathan's allergies | , , , , , | Leave a comment

Spaghetti night

Spaghetti sauce can be tricky. Unless you take the time to sort through all the jars at the store, you may as well make it yourself. I have found a few that don’t have celery and are dairy free. Now that Charlie can have garlic and onion I am able to buy it off the shelf. I have to make some things easier on myself. The boys have their spaghetti with alphabet letter pasta and tiny pieces of chicken. I cooked a tiny chicken in the crock pot all day Monday. Nathan and I had our spaghetti topped with fried breaded shrimp. So yummy. Everyone had garlic toast on their own special bread. I do it in the oven under the broiler. Easy dinner tonight!

On a side note – Charlie woke up coughing/clearing his throat like he does and with a lot of snot. So I gave him a dose of benadryl and his allergy meds first thing. He stopped coughing soon after and things cleared up the rest of the day. He didn’t start coughing again until right before dinner. I gave him more Benadryl and again he stopped. I asked him what his throat feels like when he’s clearing it nonstop and I finally got an answer from him. He says it feels gunky. So knowing the Benadryl cleared it up we’re now thinking it’s not reflux but instead an allergen. Now is it a food or airborn?

May 18, 2011 Posted by | Charlie's allergies, What's for dinner | Leave a comment

Charlie my love

Charlie is a super caring little 5-year-old. I had an ultra sound this week and we took the boys along. Thought it would be fun for them to actually see the baby inside mommy. As I laid back on the table and the nurse dimmed the lights Charlie approached the foot of the bed and said “It will be just fine mom”. He then started to rub the lower part of my legs to comfort me.He continued to stand there rubbing them until I was done.

Later that evening Charlie got in trouble for getting a little aggressive with the box of Cheese Its when I said it was time to put them up. Nathan yelled at Charlie and told him we don’t act like that. Charlie turned to Nathan getting tears in his eyes and said “Dad, you better not yell when we have the baby here, you’ll make it cry”. Nathan responded “well you better not act up”. Charlie said, now crying, “you can’t yell like that because you’ll make the baby cry!”. Oh my goodness, I won’t have to worry about any jealousy with him, he’ll just be an over protector!

May 18, 2011 Posted by | Life according to Charlie | , , , | Leave a comment

National Eosinophil Awareness Week

Today is “C” Change

* Change the way others view your disease by providing them with information about the disease and treatment options and how the disease has changed your life.

Here is a great fact sheet about EE http://apfed.org/downloads/Fact_Sheet_5_10.pdf

It says to tell how EE has changed our lives. We try just the opposite. We don’t let it change our life. We eliminate the necessary foods and keep going. We’re not going to let it take over our daily lives. My boys are all boy and we keep going doing the everyday boy things. I will admit in the beginning this disease consumed me 24/7 for a few months. I quickly learned not to dwell on it and to keep going. My boys are healthy, growing and happy. That’s what matters most!

Living life to the fullest

May 18, 2011 Posted by | daily life | , , | Leave a comment

Met our new allergist

So I called a few weeks ago to get Charlie into the allergist for his asthma. We have noticed it’s worse this summer running around playing. It’s never been officially explained to me, we don’t have an action plan. Thought I better inform myself better and see if he needed different or new meds.

We arrive and I make sure they have all the past files they need. Then the doctor comes in. Wait, let me set the scene. The traditional small exam room with a few kids toys and books. Charlie and Gage both fell asleep a half hour before we got there in the car, both still tired, irritable and quickly getting on each others nerves. They were also starting to act like they were caged animals and couldn’t get out of the room. OK, doctor comes in and I explain we’re there because Charlie’s asthma seems worse this summer. He goes through a list of questions not realizing Charlie has EE or all the food allergies. This appointment quickly turns into something I wasn’t expecting.

1. The doctor was more concerned with Charlie’s nutrition or lack of and insisted I meet with the nutritionist. I’m all for that, been waiting on a good one to come along.

2. The doctor thinks this new cough Charlie has isn’t related to EE but instead hay fever. He’s not 100% though. So we have new meds for that.

3. There’s a new blood test called microarray –  determines the allergic profile in children and adults. It tests more than 100 allergenic proteins and has been very helpful in identifying patients with serious allergies to peanuts, milk, eggs, wheat and tree nuts proteins without the risks of a food challenge. It also includes the usual allergens dust mite, cat, dog, weed, grass and mold proteins… The concordance with ImmunoCAP is better than 90% at 10% of the cost per test.  It provides a more complete picture of allergic sensitizations.    So at the end of the appointment Charlie had the blood draw. I won’t go into the details of that but we’re down to 3 nurses and mommy holding him down now.

4. Once we get the blood test results back we will base Charlie’s diet off of that. I asked though what about conflicting results. For instance, I have seen Charlie break out in blisters on his lip from mustard and we have seen him get an itchy mouth from beef. The allergist said that those are local intolerances and he can either eat them or avoid them according to his reaction if he wants it. I’m not 100% on board with that and neither is Nathan. The allergist said it’s not a true allergy just an intolerance. So I’m thinking his focus is mainly on true anaphylactic reactions. We’ll see. My head is swimming tonight with all this info.

5. Charlie will be scoped soon. Waiting for the nurse to call back with the day and time.

6. The doctor is more curious if Charlie’s EE isn’t caused by outdoor allergens instead of food since he doesn’t have major reactions to food. We’ve only had minor ones such as hives, itchy mouth and some blisters. Seriously can I put him in a bubble if it is outdoor allergens?

7. We did walk away with a new asthma plan. Starts with the green zone – mild, then yellow, last is the red zone – extreme. Well Charlie’s red zone is how we end up treating Gage when his colds get the best of him and he ends up in the hospital. I told her that and she looked at Gage and said “Does he have an asthma plan?”  I told her no and we now have an appointment for Gage to see the allergist in July. He’ll get basically the same testing Charlie had today.

8. I am going to push Nathan until he gets the new blood test done. I think it will help.

9. Charlie left today with 10 prescriptions – 6 of them were new meds.

10. I did start to have a pity party in my head on the way home but really in the grand scheme of things we’re just fine. The doctor I think was trying to get me upset a few times being sympathetic and saying oh how hard it must be to deal with all this and I told him flat-out “We deal with it like we deal with everyday. We don’t dwell on it and we keep going. No sense in sitting around being worried about it.” By the look on his face I don’t think it was the reaction he was expecting.

We’re the Root’s, not quitters!  🙂

Two and a half hours later we finally walked out of the hospital. I don’t know how I managed to keep my cool with the boys the entire time. I honestly don’t remember the last time they didn’t listen to word I said. They were horrible. Of course this is all while I’m trying to soak in tons of new info.

Don’t forget it’s National Eosinophil Awareness Week

p.s. Family be ready for copies and an education on our new action plans. You will need to know and understand them.

May 16, 2011 Posted by | Charlie's allergies, daily life, Gage's allergies | , , , , , , , , , | Leave a comment

Fish!

We’re allergic to fish but that doesn’t stop us from fishing! We try to keep things normal. Remember the pumpkins and plastic gloves up to the shoulder?

Nathan got the boys new poles a few months ago. They’ve been practicing casting all over the house. Yea me right!  He put plastic toy truck tires on the end for them instead of hooks. Not too much damage done.

So we pick a rainy, gloomy, cold and windy day to go fishing. It was fun. Just watching their little faces grin as they would reel in a fish was so much fun. Charlie lost interest pretty quick but Gage seemed to be really into it.

No one had a reaction and everyone touched a fish!

May 15, 2011 Posted by | Uncategorized | Leave a comment

Cherry Brook Kitchen

Today I would like to give a shout out to Cherry Brook Kitchen. http://www.cherrybrookkitchen.com/

Charlie recently gradutated from Pre-k, go Charlie!

I used Cherry Brook Kitchen yellow cake mix for Charlie’s cupcakes! After the ceremony we were able to celebrate with everyone else who was eating cake.

May 13, 2011 Posted by | Uncategorized | Leave a comment

Fillo

I’ve had some Fillo dough in the freezer for quite a while now. I just haven’t had the time to get it out and mess with it. I’ve never used it and didn’t realize what I was in for.

I read an article in a magazine for tiny pies. Perfect for the Fillo dough I thought. So I thawed some out and got to work. I made Gage blueberry, because Gage loves blueberries. I also made some apple and raspberry pies.

This dough was so thin. Charlie thought I was using napkins, or as he calls them napkin-towels. I mixed up the fruit mix poured it in and popped them in the oven. I started to smell burning. So I pulled them out quick and noticed the edges on a few were getting dark quick. So I grabbed the aluminum foil and made little tiny foil rings to put around each of them. Saved them.

They came out great. The crust was a little scary to the boys but I thought it was great. Plus they didn’t have all the fat and calories of using a regular pie crust.

The boys had oven bbq chicken that night and broccoli with cheese. I’m getting bored with the dinners and am starting to wonder if I should do desserts for a while?

May 12, 2011 Posted by | What's for dinner | , , , , | Leave a comment

Our bread

Since moving I have had a hard time finding bread that my boys can eat. We don’t have to get the fancy tapioca or chebe bread anymore. However, a lot of typical breads do have soy flour or potato flour in them so I have to keep a close eye out. One brand we have found here just recently appeared to read like a newspaper classified. We’ve been getting it for a few months now and it never occurred to me until this week. I’ll just post the picture.

May 7, 2011 Posted by | Uncategorized | Leave a comment

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