LIVING

With EoE, Allergies, Asthma and a G-Tube

Tinleigh’s Complicated

In December the decision was made to remove Tinleigh’s 3 safe foods and scope her to make sure she’s clear when only on the formula. Turns out, she wasn’t clear. In fact, she was worse with no foods than she was at her last scope. Her previous scope with her 3 foods was zero in her mid and 20 in her lower esophagus.  This scope she was 7 in her mid and 30 in her lower. 

tinleighWe know it’s not reflux. Her numbers were even lower when she trialed watermelon 6 months ago. Then they spiked up, then back down and now up again.

Our GI spoke with other doctors and aside from saying “good luck with that one” we are now wondering if Tinleigh is an even rarer bird. Is rarer a word? Tinleigh’s been having airborne reactions. Could those be part of this problem? What if it’s environmental allergies causing her eosinophil counts to stay high? We can’t put her in a bubble.

Our game plan is to test Tinleigh’s environmental allergies and see where that gets us. She’s only ever tested positive to a few environmental things but that was in New York. She hasn’t had those tested since moving here. Is Tinleigh allergic to our new state? Wouldn’t that be just awesome, did you catch the sarcasm there. Will our doctor prescribe a new state for us?

Before we dive into trying to figure out Tinleigh though we’re going to give Tinleigh the same break we’re giving Gage. Tinleigh is going on the same swallowed steroid twice a day. Each week we’ll let her have one need food. As long as she’s not showing symptoms we’ll keep going. She’ll be scoped around the end of April to make sure her dosage amount works for her. She will get to do this for a year or two. Then we’ll go back to figuring her out. So far she’s had squash and all of it’s varieties. This week we’re working on potatoes. She will tell you French fries are amazing. 20170222_224546

I’m really going to enjoy this time with her of letting her eat. It’s almost like introducing food to a baby for the first time, except, it’s a very expressive talkative baby that has a million things to say about the food. 20170219_103708

February 23, 2017 Posted by | LIVING | , , , , , | 1 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

   

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