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

The Doctor

So we met with our GI specialist today. We will scope Charlie to see if he does in fact have an eosinophils disorder. She again doubts he has it because he has no other signs but the fact that Gage has it and with our family history of food allergies we need to check. Especially since his list came up so long. We also talked about Gage’s new flare ups and how this keeps happening so we’ll scope him now as well. Tomorrow – two scopes.  Should be an emotional and interesting day.

May 21, 2010 Posted by | daily life | , , , , , | Leave a comment

   

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