With EoE, Allergies, Asthma and a G-Tube

Gage Update

Gage was scoped in December the same day as Charlie. We had tried to take Gage off his steroid when we took Charlie off his, but Gage started choking and coughing a lot so he went back on it. Before this scope we had removed wheat and oats from his diet because of his horrible bad scope in July. So we were really hoping there would be improvement.
It took a little longer than usual for the GI doctor to call me after their scopes so I called her. She gave me Charlie’s news with great enthusiasm. Her mood drastically changed when it was time to talk about Gage. Gage’s scope was still very bad and that is why she hadn’t called me. She didn’t know what to do and was trying to figure it out. His mid esophagus had 14 eosinophils and his distal was 54+ and there are fibrosis. Fibrosis is the hardening of the tissue which is what we are trying to avoid and the reason we do special diets trying to find the trigger foods. I got very upset. So it’s more than the wheat and oats that’s causing Gage’s issues. I told her that the only other food he’s eating that was removed before is corn. She reminded me that his patch test came back positive to pork and green beans. So after a long discussion she left it at we remove pork and green beans and keep him on his steroid twice a day. We’ll re-scope him in 3-4 months. At that time if he isn’t better, then we’ll remove corn. So Nathan and I had a talk that evening and we talked about why waiting to take out corn, because that eliminates a lot of everyday things for him. We then decided that we would let him try potatoes. If he did ok on potatoes then we would take out the corn. If he has a clean scope next time we know it’s probably pork, corn or green beans. If it’s a bad scope then we know it’s potatoes.
Gage is currently off the following foods:
peanuts and tree nuts
green beans.
It’s tough. Although having potatoes allows him to have a few flour mixes and cake mixes he couldn’t previously have because of the potato starch. Now if he could just have rice our world would be so much easier.

January 17, 2012 Posted by | Gage's allergies, LIVING | , , , , , , , , , , , , , , , , , , | 2 Comments

Charlie Update

Since I’ve been neglecting the blog for the last 3 months it’s time for an update on everyone.
Charlie was scoped in December. He has been off steroids for around 10 weeks. His scope came back zero eosinophils! This was a huge relief to us to know the steroids weren’t masking the disease. If they had been masking the disease we were going to have to remove the foods he had tested positive to when he had his patch testing. Two of which were wheat and milk. So it was very important for him to have a good scope.
Charlie has been eosinophil free since last December. He went from not eating 20 foods down to 10 this past year. The GI doctor told us at this point we don’t need to scope him unless he starts showing symptoms or we just want to know what’s going on. We are also allowed to add foods back one every two weeks. We are adding them back in order of least allergic to most allergic. We’ve given him deer and he did just fine. Next will be rice, then celery. From there it gets a little tricky because it’s foods that are typically highly allergic foods or foods we’ve seen reactions on.
Here’s his current do not eat list:
peanuts and tree nuts
seafood with the exception of lobster
all melon
going to try celery and rice.

January 16, 2012 Posted by | Charlie's allergies, LIVING | , , , , , , , , , , , , , , , , , , | Leave a comment

Stuffed peppers, never again

I thought it would be an easy quick make dinner to do stuffed peppers. Boy was I wrong.

I had some leftover stuffing mix in the freezer from the last time I made the boys stuffed peppers. However, I had put pasta letters in the mix that Gage can’t eat anymore. So I thought I would just use his quinoa. I found I was also out of rice so I would make the peppers for Nathan and I with the quinoa as well. It’s healthier anyways. As I’m getting started with everything I realize I have no meat for Gage. UGH. He can’t have the beef I’m using in ours. I guess I was thinking I would use the turkey from the frozen mixture for Charlie, but it has the pasta in it. So I run and search the deep freezer. Luckily there was some ground pork in there. Now set with everything I realized my simple little meal wasn’t so simple. I had to soak and boil the quinoa. Boil the peppers. Thaw the mixture for Charlie I had forgotten to set out. Thaw the ground pork for Gage’s pepper. Mix the sauce mixture then split between Gage’s mixture and ours. Keep all spoons separate so I didn’t cross contaminate. Find three different dishes to cook them in. I cut the boys pepper in half the wrong way. Had to figure out how to salvage it. Looking at my very full sink of dishes I realized this meal was quite the ordeal!

Fifty minutes later out came the peppers. Since Charlie thinks its cool to eat different cuisines now I convinced him this was from Spain. First place that popped into my head. I don’t really know where stuffed peppers originate from. He immediately tasted the yellow pepper. Not so good, but he did gobble up the filling. Gage loved the whole thing.

I was so excited!

No one had a reaction, I must have kept everything straight!

Darn, forgot to snap a picture of how pretty they were.

July 7, 2011 Posted by | Charlie's allergies, Gage's allergies, Nathan's allergies, What's for dinner | , , , , , , , , | Leave a comment

Stuffed peppers

I decided on stuffed peppers tonight, they’re somewhat easy to make. However, the boys are allergic to beef and rice. So I’ll use ground turkey and pasta for them. I have to be super careful while making this meal as a slight switch would put all three of them in the hospital.

So here we go…

I cooked some rice for Nathan and myself then I found some small pasta alphabet letters for the boys. I then threw some ground beef into the rice and some ground turkey into the letters. I always make sure not to mix the utensils! You should see how many dirty ones I have by the time I get done! I then spoon in some diced tomatoes. I buy the kind with onion and garlic so I don’t have to spend time sauteing them. Sure it would probably taste a little better but I do enough. The recipe then calls for a tablespoon of oregano. I put about a half tablespoon in the boys since they have less. I mix that all together so it’s ready to go in the pepper. The sauce I make is just ketchup, water and Worcestershire sauce. The boys can’t have the Worcestershire sauce so I mixed a little safe bbq sauce with their ketchup. I boil each of the peppers for 3 minutes before stuffing them. I start with a layer of the meat mixture then put a little of the sauce in there. I finish it up with more meat and sauce. On the top I make an indention with the spoon so it can hold the sauce. Bake until done. The boys took 40 min and ours took over an hour. Nathan grew up eating his with mashed potatoes so I cut up and boil some potatoes for him.

That’s it! Easy and safe for everyone.

Mommy needs a foot rub.

May 3, 2011 Posted by | What's for dinner | , , , , , , , , , | Leave a comment

Wednesday Challenge

Wednesday is Fun with family and friends.

My Challenge for you is to eat like us for a day! Here’s your list of do not eat foods: wheat, soy, sesame, rice, oats, mustard, beef, all fish, chicken, celery, corn, peas, green beans, onions, garlic, eggs, potatoes, all nuts, pineapple, all melon. Make sure and read those labels!

May 19, 2010 Posted by | daily life | , , , , , , , , , , , , , , , , , | Leave a comment

Another Gage Flare Up

So being off corn for 3 weeks Gage flared up again. Face, butt and diarrhea. Poor guy. What could it be this time? We’re thinking oats or rice. Both have a very low positive. So he’ll come off rice and oats until he gets cleared up then we’ll reintroduce them and see what happens.

May 16, 2010 Posted by | Gage's allergies | , , , , , , | Leave a comment

Are More Allergies Possible?

Took Charlie to the allergist today to get tested for mustard and eggs. We decided to do the whole food panel and seasonal allergies to get it out-of-the-way. No sense in putting him through more testing down the road. Plus Charlie is drama about somethings so I knew this wasn’t going to be fun.

Nathan holds Charlie on his lap while the nurse starts pricking his back. The first group of 8 he was ok with. The second group he started to cry and by the third he was screaming. We had to grab his hands and Nathan had to hold him tight. Poor Gage didn’t understand what was going on. I look over at him and he’s bawling at the site of his brother in pain. I’m trying not to cry and trying to get ahold of Gage’s hand to help console him. HORRIBLE

Once it was over Nathan takes Charlie to the play room. I have to change Gage’s diaper. He repeats over and over in his toddler language “needle?” 

Once the timer beeps we all head back to the room. The nurse holds Charlie on her lap as she measures and reads off a bunch of numbers to another nurse. The nurse writing says to me “You guessed mustard, right?” Right I answer. She says “mustard is one, and beef….” I just sort of ignore the rest of what she said. I could see he had a lot of hives but really didn’t want to believe them. The Dr comes in, looks over the paper then looks at Charlie’s back. He then starts to read: Soy, all nuts, all seafood, beef, chicken, cantaloupe, pineapple, celery, corn, green beans, onion, pea, garlic, mustard, oat and rice. I was head down, in complete tears and had to leave the room. So I gather myself and step back into the room. Nathan at that point is asking about the research they do in Cincinnati Ohio. The Dr said he is going to refer us there. He doesn’t want to come out and say Charlie has the same disease as Gage, but with Nathan’s food allergy history and the fact that Gage has it… We’ll get Charlie scoped and see what happens.

Charlie also has seasonal allergies to all pollen, outdoor mold, cats and dust.

May 13, 2010 Posted by | Charlie's allergies | , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Negative Corn

Blood results in and Dr says corn is negative. Rice is still a low 1.2 and oats is a 1. With both of those numbers being low and I’ve never seen a reaction we keep him on them. I argued about the corn and the Dr said we can do a test in office to see how he reacts to corn. He doesn’t want me to take him off corn because there isn’t a lot left with out it. I already know this. Dr says feed him corn, I will feed him corn.

So today at lunch I pull out a jar of baby food that is a safe veggie blend for him with corn. It’s all organic too. An hour later, diarrhea. Three hours later his bottom is starting to get inflamed again. I also gave him a popsicle (corn syrup) and his face flared up some more. It hasn’t gone away since this new stuff popped up. So Dr. still don’t think it can’t be corn. *gasp* I guess I have some anger. I told my husband tonight that I knew when Gage was allergic to soy and the Dr doubted me. BOOM big time allergic. I’m pretty sure I’m right this time too.

Not the most flattering picture of him but you can see how’s he broke out. It’s not eczema. It starts out as little dots, like on his forehead. Around his mouth the dots are becoming more dense in certain areas. I was told they are more environmental. He really doesn’t have any environmental allergies. Two came back positive: Russian Thistle and (get this) COCKROACHES! Who in the world is allergic to cockroaches? 

Hopefully the GI Dr can give me some more insight as to what’s going on. I’m very nervous now about rice and oats because who knows what’s going to make his throat swell more.

May 11, 2010 Posted by | Gage's allergies | , , , , , , , , , , | Leave a comment

Blood test

We did a blood test on Gage today testing for : corn, rice, chocolate, oats, chicken and all environmental elements.

He tested negative on the skin prick test for all these back in Dec. Except the environmental, we’ve never tested on that stuff. So hopefully the blood test will give us some clue as to what’s going on with him. We are not going to give him corn until we get the results. We’ll keep rice in the diet. It actually tested positive back in December but we’ve never seen a reaction to it. Next week we’ll have the results.

May 3, 2010 Posted by | Gage's allergies | , , , , , , , , , | Leave a comment

Poor itchy Gage

This morning Gage woke up and had a few more dots. By noon he was itching like crazy and I had spoken to the on call allergist. Keep Benadryl and allergy meds in him. He will be tired but it should keep him comfortable. So we did that along with limiting his diet down to a few single foods. He had some corn at snack and a hive popped up beside his mouth. OH CRAP! Not corn. By evening he was feeling much better. Not itching as much. He didn’t get anymore hives. We’ll see what tomorrow brings. Monday he will go to the allergist and we’ll get this figured out!

My mommy instinct says it’s either the prevacid he just started taking, chocolate he had a lot of this week, corn, rice or the grass. I’m really praying its chocolate and not something major like the corn or rice!

May 1, 2010 Posted by | Gage's allergies | , , , , , , , , , , | Leave a comment

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