LIVING

With EoE, Allergies, Asthma and a G-Tube

Bad scope

Gage was recently scoped. We knew ahead of time it wasn’t going to be good. We were having troubles getting him to eat. He was “gunky” in his throat a lot while he ate. He even complained of potatoes in his ears when he ate. There were even a few occurrences of him having a reaction to his dinner when it was made from scratch, 100% safe, and he shouldn’t have been reacting to any of it.

Doing this scope with out his side-kick, Charlie, I could tell Gage was nervous by himself. He was a trooper though. No tears, no whining, he did as he was asked and made it easy on everyone. I think me staying calm helps him to stay calm. I always use distraction techniques too. Talking about the positive of why we do it. A treat he might get to have after we’re done. Things like that. They wheeled him away in a wagon in his giggly loopy state of mind. Forty five minutes later I met the GI doctor in a tiny room. Gage’s esophagus is covered in white. I think it’s probably candida but it could be eosinophil abscesses. There is fibrosis and linear furrowing. He is inflamed. His stomach and small intestine do look good though.

*sigh*

It’s like you know it’s bad, but you don’t really want to hear how bad.

So I gather my thoughts while I wait on the biopsy results. Well he’s off of everything he’s ever tested positive to. The one thing he hasn’t tested positive too but most kids with EoE respond to the removal of is dairy. Okay, so we’ll remove dairy. We’ll also have a skin prick test done on all foods to see where he is on those since it’s been a while since he had them tested.

That Friday the GI nurse calls. The doctor would like a meeting with you. Strange, she’ll usually call me herself. Gage doesn’t have candida, he has eosinophil abscesses. His entire esophagus is covered in clusters of white blood cells. His counts are about the same as they were in December staying at 50+ in the mid and lower esophagus. ugh. I inform the nurse we’re getting the skin prick test done the following week and we can meet with the GI doctor Friday.

That brings us to today. We had the skin prick testing done. I hate it. He hates it. I somehow manage to talk Nathan into going with us. (YAY!) We talk with the allergist then the nurse comes in with the tray. I don’t see any caterpillars. She says she wants to do it on his arms. I see a big needle. My heart starts racing and I panic. She assures me if he doesn’t take well to this way then we’ll do it on his back. He holds his little arms out as she instructs and she gets busy. He replies “that didn’t hurt” over and over. Phew. Towards the end a few were starting to hurt and he was itching before she was even done. I had taken in millet flour, sorghum flour, coconut flour and xanthan gum to test these since he eats these all the time. I could instantly see these spots getting red. The nurse even commented on them. I lost it. I had to leave the room. I let the tears flow a minute then sucked it up and headed back in. Nathan of course jumped on me to suck it up and not make it worse for Gage. I knew that. I blew on his little arms to help with the itching and watched the welts grow. The allergist came in before the time was even up and just shook his head. Thanks doctor. So he started marking things down. We quickly realized they didn’t have a test for potato on his arm and the nurse was sent to find some. We got that on there. Thank goodness we did. The results of this test are so frustrating.

Old test are things that were positive and he is not eating. New test are the things that were positive along with new foods. They didn’t have a few of the foods so I have NA listed on the new test.

Old test                                                 New test                                             

Beef                                                        Beef

eggs                                                       eggs

soy                                                         soy

rice                                                       NA – doing blood test

seafood/fish                                        seafood/fish

peanuts/tree nuts                              peanuts/tree nuts

peas                                                      NA – but in the nut legume/nut family

mustard                                              NA

celery                                                  0

sesame                                                0

wheat                                                   0

oats                                                       NA – doing blood test

corn                                                      0

potato                                                   potato

pork                                                       0

                                                            millet

                                                             sorghum

                                                            poultry

He’s never tested positive to dairy and still is not. The last 3 are listed in the new column are things that are in his everyday diet. So it’s no wonder he’s such a mess. However, the foods wheat, corn and dairy are typically taken out of an EoE kids diet even if they don’t test positive to them to help them get clear. I took those things out and replaced them with what he’s now allergic to. He’s still not testing positive to dairy so why should I take it out? Or should I because so many kids clear up once it’s removed. You would think just removing what he’s having an issue with and putting the other foods he’s zero on now would be the solution. I hope the GI doctor see’s it that way on Friday. We are doing a blood test on milk, wheat, chicken, potato, corn, shrimp, rice and oats.  His shellfish was screwy. Shrimp was very positive but nothing else was. That’s not common. So it’s either a false positive or false negatives on the lobster, crab and clam. Who knows. He told us we really need to stay away from beef as it is very high, along with egg, peanuts and soy.

Not the cut and dry answer I was hoping for but at least there’s some changes we can make.

Friday’s appointment can’t get here soon enough.

August 22, 2012 Posted by | Gage's allergies, LIVING | , , , , , , , , , | 5 Comments

   

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