LIVING

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:
Beef
eggs
soy
rice
seafood
peanuts and tree nuts
peas
mustard
celery
sesame
wheat
oats
corn
pork
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:
Beef
eggs
soy
sesame
peanuts and tree nuts
seafood with the exception of lobster
all melon
peas
pineapple
going to try celery and rice.

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

Our new enemy – CORN

Here’s a list of Gage’s food allergies that was stay clear of: beef, wheat, soy, sesame, celery, mustard, eggs, peas, potatoes, sweet potatoes, all nuts & fish.

Since doing the blood test yesterday to check for more food allergies we are staying clear of corn. CORN is in everything. It was in 75% of the baby food he could eat. While making him Gage safe pancakes this morning I learned corn starch is in baking powder. There goes our egg substitute for baking. Then at lunch I learned corn syrup is in the safe hotdogs he can eat. What else will you pop up in corn. Oh there goes a snack – popcorn!

This will not be a fun week and a half while waiting the results.  

May 4, 2010 Posted by | Gage's allergies | , , , , , , , , , , , , , , , , , | 2 Comments

A little Gage introduction

Gage is my latest creation.  I would best describe him now as shy, strong, loving, mellow and a great dancer.

He started with his food allergy issues before we even realized what was going on. Around 8-9 months when I started some table foods he would choke and puke everyday. I mentioned it to the pediatrician and we wrote it off as a sensitive gag reflux. A few months went by and he was still vomiting. But now it would be 15 – 30 minutes after a meal. He would also become horse. Knowing what I know now, we’re so lucky he never had an anaphylactic episode. My husbands food allergies are so severe that he instantly becomes covered in hives and basically has an anaphylactic episode if he eats the tiniest food allergen. So we didn’t really think of what was happening to Gage as being food allergies. Charlie had a few when he was little but he would get hives. So again I mention it to the pediatrician and he says we’ll watch him and we may have to check a valve or something. Well I was keeping an eye on the foods he was puking up and it seemed to be cheeses and things with egg. So I made the dreaded allergist appointment. This was in the fall of 2009. We didn’t do a full panel on Gage because I thought I could tell what it was and we did a few other highly known allergies. POSITIVE! I didn’t cry because at that point it was only egg, nuts, peas, all fish and wheat. No biggie I can handle that. Actually peas were negative but I had seen him get a few hives while eating them. We did a control test and he broke out in hives eating only 1/3 of a pea. So no peas. His wheat count was low so he was still getting that in small doses.

A few months later he had a horrible reaction at dinner and he didn’t have anything in the meal that had shown a positive reaction so back we went. I insisted it was soy, the allergist questioned it but tested it anyways  – BINGO! What is it they always say? A mom knows hers kids best or something like that. So we added soy to the list.

Another month went by and he started getting hives after more meals. So back to the allergist, this time we did a full panel. I actually laughed when the allergist told me all the positives. I guess that was how I kept myself from crying; egg, peas, soy, wheat, fish, all nuts, beef, all potatoes, rice, celery, mustard and sesame. What is this kid going to eat.

I can honestly say at this point I have no longer enjoyed grocery shopping. Those first few trips I went alone trying to find anything for him to eat. I do need to mention we kept him on rice because it was low and he had never shown a reaction. Still to this day I find myself almost in tears looking at certain kid foods feeling bad that he can’t eat it. I then struggle because his brother can, so do I buy it and sneak it to him? Should he miss out too? It’s these sort of thoughts and things that bother me the most. Gage is actually fine and doesn’t know any different. He’s healthy and huge – always been on the 75% for his growth.

After his last allergist appointment he mentioned EE to me and said let’s get him tested for it, it’s something that can be treated with medicine. Oh well that sounds great! Let’s do it. I hate the thought of him on meds all the time but if it helps him eat let’s check it out!  BUZZ WRONG ANSWER  I went home and did a little google search. Not really what I was expecting. Made the GI appointment and made my list of questions.

At the GI appointment she walked in, we spoke a little, she looked at Gage and said “He really doesn’t look like he has EE. However, he does have a lot of strange food allergies. We can scope him now or we might be scoping him down the road when he comes in with something stuck in his throat.” She was really positive that he didn’t have it. My husband and I decided let’s go ahead and scope him now because we’re going to have to do it at some point anyways. We had Gage scoped the end of January this year. Sure enough his little esophagus was so swollen the Dr was surprised he could even swallow food.

April 26, 2010 Posted by | Gage's allergies | , , , , , , , , , , , , , , , , | Leave a comment

   

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