LIVING

With EoE, Allergies, Asthma and a G-Tube

Met our new allergist

So I called a few weeks ago to get Charlie into the allergist for his asthma. We have noticed it’s worse this summer running around playing. It’s never been officially explained to me, we don’t have an action plan. Thought I better inform myself better and see if he needed different or new meds.

We arrive and I make sure they have all the past files they need. Then the doctor comes in. Wait, let me set the scene. The traditional small exam room with a few kids toys and books. Charlie and Gage both fell asleep a half hour before we got there in the car, both still tired, irritable and quickly getting on each others nerves. They were also starting to act like they were caged animals and couldn’t get out of the room. OK, doctor comes in and I explain we’re there because Charlie’s asthma seems worse this summer. He goes through a list of questions not realizing Charlie has EE or all the food allergies. This appointment quickly turns into something I wasn’t expecting.

1. The doctor was more concerned with Charlie’s nutrition or lack of and insisted I meet with the nutritionist. I’m all for that, been waiting on a good one to come along.

2. The doctor thinks this new cough Charlie has isn’t related to EE but instead hay fever. He’s not 100% though. So we have new meds for that.

3. There’s a new blood test called microarray –  determines the allergic profile in children and adults. It tests more than 100 allergenic proteins and has been very helpful in identifying patients with serious allergies to peanuts, milk, eggs, wheat and tree nuts proteins without the risks of a food challenge. It also includes the usual allergens dust mite, cat, dog, weed, grass and mold proteins… The concordance with ImmunoCAP is better than 90% at 10% of the cost per test.  It provides a more complete picture of allergic sensitizations.    So at the end of the appointment Charlie had the blood draw. I won’t go into the details of that but we’re down to 3 nurses and mommy holding him down now.

4. Once we get the blood test results back we will base Charlie’s diet off of that. I asked though what about conflicting results. For instance, I have seen Charlie break out in blisters on his lip from mustard and we have seen him get an itchy mouth from beef. The allergist said that those are local intolerances and he can either eat them or avoid them according to his reaction if he wants it. I’m not 100% on board with that and neither is Nathan. The allergist said it’s not a true allergy just an intolerance. So I’m thinking his focus is mainly on true anaphylactic reactions. We’ll see. My head is swimming tonight with all this info.

5. Charlie will be scoped soon. Waiting for the nurse to call back with the day and time.

6. The doctor is more curious if Charlie’s EE isn’t caused by outdoor allergens instead of food since he doesn’t have major reactions to food. We’ve only had minor ones such as hives, itchy mouth and some blisters. Seriously can I put him in a bubble if it is outdoor allergens?

7. We did walk away with a new asthma plan. Starts with the green zone – mild, then yellow, last is the red zone – extreme. Well Charlie’s red zone is how we end up treating Gage when his colds get the best of him and he ends up in the hospital. I told her that and she looked at Gage and said “Does he have an asthma plan?”  I told her no and we now have an appointment for Gage to see the allergist in July. He’ll get basically the same testing Charlie had today.

8. I am going to push Nathan until he gets the new blood test done. I think it will help.

9. Charlie left today with 10 prescriptions – 6 of them were new meds.

10. I did start to have a pity party in my head on the way home but really in the grand scheme of things we’re just fine. The doctor I think was trying to get me upset a few times being sympathetic and saying oh how hard it must be to deal with all this and I told him flat-out “We deal with it like we deal with everyday. We don’t dwell on it and we keep going. No sense in sitting around being worried about it.” By the look on his face I don’t think it was the reaction he was expecting.

We’re the Root’s, not quitters!  🙂

Two and a half hours later we finally walked out of the hospital. I don’t know how I managed to keep my cool with the boys the entire time. I honestly don’t remember the last time they didn’t listen to word I said. They were horrible. Of course this is all while I’m trying to soak in tons of new info.

Don’t forget it’s National Eosinophil Awareness Week

p.s. Family be ready for copies and an education on our new action plans. You will need to know and understand them.

May 16, 2011 Posted by | Charlie's allergies, daily life, Gage's allergies | , , , , , , , , , | Leave a comment

Double Scope Day

Not scoped top and bottom, but two boys each scoped.

Having any procedure done they always say no food or drink after midnight. So why would they schedule a 4 and 2-year-old at noon and 1 P.M.? We kept the boys up an extra hour thinking they would sleep in a little. No way. Charlie was up at 6:15 a.m. Explaining to a 4-year-old that he can’t have his morning hot cocoa wasn’t easy. Try skipping your coffee for a morning and see how grumpy you are. Gage slept until about 8. So to keep them busy and not thinking about food or drink I took them to pick out a toy. Totally worked! Everyone stayed happy.

We arrive at the hospital and daddy meets us there. They call Charlie back first and I go with him. Gage came shortly after with Daddy and they were across the hall. We get Charlie in his gown, answer questions and put some numbing cream where they would do the IV. He has no clue what is about to happen. We decided to keep it that way or we would have never gotten him in there without being clawed to death. So I ask the nurse if he will get the drink to make him loopy. She tells me no and asks how much help she’ll need getting blood and the IV into him. I said a lot he is big time drama. So she comes back with three nurses. No sooner did she have out the rubber band to go around his arm he was screaming and we couldn’t hold him down. Actually I don’t think I want to blog this story. It’s not nice, the turn out was horrible, I will be filling out a negative questionnaire. Let’s just say even the nurse was crying when it was all over. So once they take Charlie back we can hear Gage across the hall calling for us. I’m dizzy at this point because I hadn’t eaten either so I sat in Charlie room and nibbled a sandwich Nathan brought me while he went over with Gage. Gage was calm and relaxed from his drink. No worries in his room. The GI doctor came into his room very happy that she did not see anything wrong with Charlie inside. GREAT NEWS. Now it’s Gage’s turn. He went without a peep, just happy to be getting a table ride. Charlie came out and he was very drugged up. Again, I’m not going into it. The GI doctor came out a quick 5 minutes later. GAGE LOOKS GREAT! His swelling was gone! We couldn’t have had better news.

The first three pictures left to right are his scope from January. The last one is from Tuesday. You can see there is no more swelling and you can see the veins now.

Gage came back to us shortly after. Charlie pukes a few times. Then we all went home for the evening. In shock from all the emotional drama before and the great news after we were all four exhausted.

Now we just wait for about a week and we’ll have their biopsy reports to tell us their eosinophil numbers to make sure they’re both 100% okay. It’s going to be a long week of waiting.

May 22, 2010 Posted by | Charlie's allergies, Gage's allergies | , , , , , , , , , , | Leave a comment

   

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