LIVING

With EoE, Allergies, Asthma and a G-Tube

The Final Clinic Day

As we head off to the see the three doctors I was anxious. Not knowing what the results would be I felt out of control.

We see the allergist first who looks at their backs again. Gage went first. Gage showed a reaction to soy and peanut. He showed an irritant to barley, quinoa, ham and green beans. So I start in with my questions. For instance: Gage was off of wheat and oats, had a clear scope, we added wheat and oats to his diet and at his next scope he was horribly inflamed with the highest eosinophil count he’s ever had. Why isn’t wheat or oats showing up? The doctor explained that it could have been one of the other foods he is eating that he showed an irritant to like pork. He also explained that the prick test and blood test have nothing to do with the patch test. Gage is possibly allergic to all the foods he tested positive to on the prick test. The foods that showed up on the patch test are the ones that are effecting his esophagus and his body isn’t necessarily allergic to them. Holy crap this is all crazy. So basically we now have two food lists for each of the boys. An actual allergic reaction list and a list that effects their Eosinophilic Esophagitis.

Let’s move onto Charlie.

The doctor read Charlie’s back then explained his findings to me. He said Charlie’s back had really changed from the day before. I knew this wasn’t good. Charlie’s positives are milk, wheat, barley, quinoa and carrot. Charlie heard the doctor say carrot and he got so excited. He hates carrots. I on the other hand want to crawl out of the room hearing wheat and milk. The doctor told me that milk is a tough one to test. If a kids tests positive to milk on the patch test then that means it really must be bad. I held my shit together, the day wasn’t over and we might not have to give them up. So with that all done the allergy doctor calls the GI doctor as we’re walking to her office to talk about what he had found.

The GI doctor admitted we had her a tad stumped since we were such a freak family with allergies. She was very nice and wanted to keep things easy for me. I had told her on the very first day no way would we ever do the elemental diet, where the boys are only on a drink and no food, so she was going to work through this with me. We first talk about Gage. Then jump to Charlie. It sort of kept going back and forth. Having a long list of actual food allergies along with these new foods made it hard. Gage for instance can’t eat wheat and eats a lot of quinoa as a grain. However, he tested quinoa as an irritant to his esophagus. She was also concerned about Gage because in his last scope he is showing signs of his esophagus becoming hard with scar tissue like Nathan has. We want to avoid that at all costs. She said because he was on the steroid at the time of the scope that really worried her. He should not have been so inflamed. So we decided that even though pork is a huge food for Gage we will remove it along with the other new foods. We will also take him off his steroid and scope him December 1st. She wanted to do it in 6 weeks but I told her no way would I be in the right state of mind for a big scope day with a new-born. I am very sad to remove pork from Gage’s diet. He’s loved bacon from the day he could chew it up. That and sausage links. We’ve tried turkey bacon but he doesn’t care for it.

Gage’s lists.

Food allergies: soy, peanut, beef, celery, mustard, wheat, rice, oat, sesame, peas, fish, shellfish, tree nuts, peanuts, eggs and potatoes. We did not put egg on the patch test because he is anaphylactic to it and is already off of it.

Eosinophilic Esophagitis irritants: soy, peanut, barley, quinoa, pork and green beans.

Charlie was a tough one to talk about. I expressed my strong feelings about removing wheat and milk. She totally agreed but told me that even though he’s had clear scopes the steroids might be masking the real results. The milk and wheat might be why Charlie is doing the constant clearing of his throat after he eats. We’re taking Charlie off the steroids and see what happens. She gave me the choice to go ahead and remove all his new foods or keep him on them. I chose to keep him on them. I knew with this new baby arriving soon I wouldn’t have it in me to be keeping things straight. I have frozen meals ready and no way am I redoing everything! Charlie will also be scoped December 1st. If Charlie is inflamed then we will remove (gulp) milk, wheat, barley, quinoa and carrot.

Charlie’s food allergy list: Beef, eggs, soy, rice, tree nuts, peanuts, all melon, celery, pea, pineapple, fish and some shellfish. He recently had lobster and that one was fine.

So after we had our game plan my thought was what if they both have clear scopes? How do we go about adding foods back? Do we start with the foods that effect their esophagus or do we start with foods that they tested positive to in the prick test. We’ve been adding food back for Charlie and he’s doing awesome. I think we’re up to 10 foods back in his diet. She said let’s just wait and see what happens because she wasn’t completely sure which route to take.

She then informed me that she wanted a blood draw on both of them to check for a few things. OH FUDGE! We keep them trapped in little rooms for 4 hours and now you want to take their blood. Shoot me now. I instantly felt super hot and dizzy. So down we go to the lab. They had not been in this particular lab before but as soon as they walked in the little room with “The Chair” they both turned to tears. Mom why are we in here? What are we doing? Can we just leave? I was silent. I couldn’t even bring myself to tell them. So I sat down and held them as they cried. They knew what was coming. Charlie then hid behind the table as Gage wept in my lap. The girl walks in and I mouthed “This is going to be horrible” She then realized Charlie was behind the table and I could see in her face the look of oh no. I scooped up Gage and we went to the chair. He cried and told me no over and over. He didn’t fight me though. We got it done and he got a sticker. He was still upset though because Charlie was crying out loud the whole time Gage was doing it and I know Gage felt bad that Charlie had to go next. When we do Charlie it always takes a few extra people. However, it was the end of the day and she was the only one left. So I had to get him out from behind the table. I tried the whole bribe thing, which didn’t work, and I had to put on the stern mom voice. Which I hate doing when I know he’s so upset. I finally got a hold of his hands and feet and slide him out. I scooped him up keeping his legs in the air away from my belly.  He is at this point screaming. I quickly sit down and she puts the arm rests down hoping to hold him in. Just then the door opened. Apparently while I was trying to get him out she called for back up. So the new nurse asked to hold him and I was fine with that. She gets him on her lap and he freaks out more. “I want my mom to hold me!” The nurse told him we would do that but he had to promise not to hurt my tummy. He agreed. So we switched again. I wrapped one of my legs around both of his and she held his other arm. He is just screaming and trying to get away. The needle nurse wastes no time and just gets it done. I think I forgot to thank her for doing that and not trying to make it better. It was horrible but it was over. I finally look over at Gage who is just so worked up after watching his big brother go through that. Just then super nurse showed them the treasure chest. So sucking up tears and their breath they both dug until they found the most wonderful plastic little toy. I wanted to just lay down and take a nap.

Now that the boys are off their steroid I am worried about how the next few months will go. We don’t even know if Gage’s esophagus is still inflamed. If it is we run the risk of it becoming completely swollen shut and the risk of food impacting. Keeping Charlie on the foods he showed positive to in the patch test could do the same to him since he’s not on his steroid. So I’ll have my eagle eye on them every time they’re eating these next few months.

Overall I’m pleased that we did this. A bit bummed with the results. We have to do what it takes to keep them healthy and I will still remain super mom in the kitchen!

Sure could use a glass of wine!

September 16, 2011 - Posted by | Charlie's allergies, Gage's allergies, LIVING | , , , , , ,

2 Comments »

  1. Wow, that’s rough. No wonder you didn’t want to post for awhile. I hope you get things figured out soon!

    Like

    Comment by Annaliese Lemmon | September 16, 2011 | Reply

    • Thanks! It’s gonna be a long road with lots of patience. I just hope it’s not a bumpy one.

      Like

      Comment by livingtheallergylife | September 18, 2011 | Reply


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