LIVING

With EoE, Allergies, Asthma and a G-Tube

Our First Clinic

When we first discovered the boys had Eosinophilic Esophagitis we debated on going to the specialty clinic in Cincinnati. Once we found trust in our allergist and GI doctor we changed our minds. Since moving to a new state and finding new doctors I quickly realized I did not like our new allergist. While on the phone with one of the nurses she had mentioned that maybe we should go see the specialty clinic group. Having a group so close we decided we would give it a shot.

The specialty group is an allergist, GI and nutritionist that all work together. They actually sit down together and discuss each patient.

It took 3 months for us to get in and today was our first day. The papers said it would be a 2-1/2 hr appointment. We would review their history and what was to come, along with patch testing. Patch testing intrigued me. We’ve only done blood work and the ever dreaded prick testing.

So with a bag full of entertainment, snacks and two thick stacks of files we headed off. It takes an hour to get there so we ate lunch in the car. Strapped in and nothing to do, that’s when they eat best! We arrive and head right in. They must have been on top of things. We learned Charlie is finally gaining weight, he’s up to 44lbs now!  Gage is still putting on some pounds, he’s an ounce away from 36lbs.  With only 4″ between them I’m wondering how soon Gage will catch up! The nurse leads us to our room where another one comes in to get our computer file pulled up. We only had to wait about 10 min to meet with the GI doctor. I was impressed things were moving along. I had a timeline of the boys reactions, allergy testing and scopes all written up. This made things so easy. We covered all angles of their allergies, EoE, possibly scope plan and their diets. She quickly learned the boys are not the typical EoE patients as they don’t have the symptoms. The only proof of the disease is their scopes. Typical kids have lots of tummy troubles, heartburn, diarrhea, trouble swallowing…etc. So with that said we’ll approach things with caution and have our game plan on Thursday. After we went over everything came time for the patch testing.  Patch testing is taking an actual piece of food, mashing it up and putting it on a small disc. The disc is in the center of a square piece of medical tape which is then placed on their backs. They wear them for 48 hours. Charlie was nervous and upset at first, the unknown was going to be placed on his back where he had been stabbed with a stupid little caterpillar in the past. Once he realized it was only tape and didn’t hurt he was just fine. Gage’s reaction was to immediately tell me he would not be doing it too. With the promise of  a sucker when he was done Gage did get his patches on. Since Gage has anaphylactic reactions to egg and recently had blisters around his mouth from peas we avoided doing those two foods. So now I have two boys with tape all over their back that cannot come off until Wednesday. This should be interesting. No bath or shower, no getting sweaty and no taking them off!

We go back on Wednesday and remove the patches and read the results. It’s suppose to be an in and out appointment. Wednesday afternoon/evening the three doctors meet and go over a plan for the boys. Thursday afternoon we go back and go over things.

On top of having his back all taped up Gage came down with yet another cold on Friday. I’m guessing from his first week at pre-school. By Sunday he was wheezing and today he keeps going down hill. I have called in his oral steroid because the albuterol in the nebulizer just doesn’t seem to be helping things this time.

September 12, 2011 Posted by | Charlie's allergies, Gage's allergies | , , , , , , , | Leave a comment

Specialist

I am so excited! We got accepted into the EE specialist group in our area. Well, it’s a bit of a drive, but close enough!

The group consists of an allergist, a GI doctor and a nutritionist. We don’t go until September, but I am willing to wait. With the conflicting new blood test and scope results my head is starting to spin. I think a group of doctors actually working together would help ease my thoughts about what’s going on. Instead of one doctor doing one test, another doing the scope then they just sort of rely on each other to give good advice on what to do. I loved my doctors in Indiana and wish I could find a pair like them again. Hopefully this new group will be it!

June 26, 2011 Posted by | Charlie's allergies, Gage's allergies | , , , , | Leave a comment

   

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