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

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

A little Gage introduction

Gage is my latest creation.  I would best describe him now as shy, strong, loving, mellow and a great dancer.

He started with his food allergy issues before we even realized what was going on. Around 8-9 months when I started some table foods he would choke and puke everyday. I mentioned it to the pediatrician and we wrote it off as a sensitive gag reflux. A few months went by and he was still vomiting. But now it would be 15 – 30 minutes after a meal. He would also become horse. Knowing what I know now, we’re so lucky he never had an anaphylactic episode. My husbands food allergies are so severe that he instantly becomes covered in hives and basically has an anaphylactic episode if he eats the tiniest food allergen. So we didn’t really think of what was happening to Gage as being food allergies. Charlie had a few when he was little but he would get hives. So again I mention it to the pediatrician and he says we’ll watch him and we may have to check a valve or something. Well I was keeping an eye on the foods he was puking up and it seemed to be cheeses and things with egg. So I made the dreaded allergist appointment. This was in the fall of 2009. We didn’t do a full panel on Gage because I thought I could tell what it was and we did a few other highly known allergies. POSITIVE! I didn’t cry because at that point it was only egg, nuts, peas, all fish and wheat. No biggie I can handle that. Actually peas were negative but I had seen him get a few hives while eating them. We did a control test and he broke out in hives eating only 1/3 of a pea. So no peas. His wheat count was low so he was still getting that in small doses.

A few months later he had a horrible reaction at dinner and he didn’t have anything in the meal that had shown a positive reaction so back we went. I insisted it was soy, the allergist questioned it but tested it anyways  – BINGO! What is it they always say? A mom knows hers kids best or something like that. So we added soy to the list.

Another month went by and he started getting hives after more meals. So back to the allergist, this time we did a full panel. I actually laughed when the allergist told me all the positives. I guess that was how I kept myself from crying; egg, peas, soy, wheat, fish, all nuts, beef, all potatoes, rice, celery, mustard and sesame. What is this kid going to eat.

I can honestly say at this point I have no longer enjoyed grocery shopping. Those first few trips I went alone trying to find anything for him to eat. I do need to mention we kept him on rice because it was low and he had never shown a reaction. Still to this day I find myself almost in tears looking at certain kid foods feeling bad that he can’t eat it. I then struggle because his brother can, so do I buy it and sneak it to him? Should he miss out too? It’s these sort of thoughts and things that bother me the most. Gage is actually fine and doesn’t know any different. He’s healthy and huge – always been on the 75% for his growth.

After his last allergist appointment he mentioned EE to me and said let’s get him tested for it, it’s something that can be treated with medicine. Oh well that sounds great! Let’s do it. I hate the thought of him on meds all the time but if it helps him eat let’s check it out!  BUZZ WRONG ANSWER  I went home and did a little google search. Not really what I was expecting. Made the GI appointment and made my list of questions.

At the GI appointment she walked in, we spoke a little, she looked at Gage and said “He really doesn’t look like he has EE. However, he does have a lot of strange food allergies. We can scope him now or we might be scoping him down the road when he comes in with something stuck in his throat.” She was really positive that he didn’t have it. My husband and I decided let’s go ahead and scope him now because we’re going to have to do it at some point anyways. We had Gage scoped the end of January this year. Sure enough his little esophagus was so swollen the Dr was surprised he could even swallow food.

April 26, 2010 Posted by | Gage's allergies | , , , , , , , , , , , , , , , , | Leave a comment

   

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