About Us

This blog is changing, just as our family is changing. It was originally started to keep in touch with family and friends far away, but when you face a life altering disease EVERY aspect of your life is changed and in some way effected by it. Now I need a place to vent, to share, to help people understand the struggles that we face as a family with 2 children that are struggling with the Disease Eosinophilic Esophogitis, and with all of us having multiple food allergies. So this blog is becoming my journal so to say, an outlet for me to express my frustrations, share my joys, and put all information into one place for those that want to know. Why share something so personal, and often too hard to bare? Well...so much of this disease is silent. We work so hard to help our kids lead a normal life and no one sees the struggles faced daily, and I think it is important to let people know and understand.

What is Eosinophilc Esophigitis?

What is Eosinophilic Esophogitis? Also known as EE, or Eos, or EoE.

First let's start off by saying, there is NO CURE! There is NO FDA approved treatment. And often the only form of successful treatment are large doses of steroids and/or elimination of "trigger" foods, which sometimes as in the case of our 2 boys is an elimination of ALL foods. Forcing them to be on an Elemental Formula ONLY diet and water.

Second let's start with the layman's definition as I know how to explain it, and then I will add links with better medically explained and more in depth definitions. Eosinophils are a form of white blood cell, and in persons with this disorder these eosinophils attack food as if they are a parasite, causing damage to nearby tissue in any part of the digestive tract (in our case the Esophogus). This causes reflux that often does not respond well to reflux meds, vomiting, pain, aversions to food, rashes, diahrea, constipation, and many more symptoms like leg and joint pain, headaches. All of which these symptoms lead to more and more problems from which many you will learn about by reading my posts.

One of the bests places for accurate up to date info go to: Apfed, http://apfed.org/drupal/drupal/index.php

And of course this blog reads most current posts first, so I'll do my best to label important posts to help you catch/keep up.

Monday, March 8, 2010

Abinadi Allergy Results

We had Abinadi retested for allergies, but we have had so much difficulty introducing new foods and getting him off of the most basic of baby foods that we were trying to get a basic baseline and to then move forward from there. He had 50 prick tests and 25 patch. The pictur is from a week later and a bath later, his back was so small they had to do pricks all the way down his bottom. Good news is that he is not anaphylactic for any allergens, nor does he have any seasonal, environmental, or pet allergies. Yeah!!! His patch test was a different story.
Here’s is the breakdown of Abinadi’s Allergies:
Milk
Apples
Peas
Garlic (which can be found in many processed foods)
Beef
Chicken
Pork
Now Abinadi might have many more food allergies, this was just a baseline test to get us started. We will have to see what the future brings. He also has a contact allergy of Lanolin, fragrance, and CAPD, which are found everywhere in household products and mostly all soaps, and body care products. Which he will never grow out of, and buying hypoallergenic or fragrance-free does not guarantee that they are free of these allergens.

The BIG news is that Abinadi most likely has ASTHMA. It is a daunting diagnosis but we have already started him on medication and it has made a huge difference in his lifestyle! Even with his eating because he breaths better.

So what does this mean? We get to go exotic with meats, wild game and fish. And while he doesn’t have many household, environmental or seasonal allergies we need to get rid of them to help his asthma. The good news is that since we have been medicating his asthma, his ability to eat “grown up” food has improved. The doctor claims it is because when you eat you need to breath and when you can’t breath, you can’t eat. Who would have thought?

Also he does not appear to have a soy allergy, so hopefully by the end of the year we can have both children eating soy. The problem; garlic is an allergy like soy that is in everything so the likelihood of him being able to eat out, or many processed foods will still be slim.
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1 comment:

Rollo Descendant said...

Your poor kiddos. That must be awful for you all to go through that testing. I'm glad they were able to help Abinidi with his breathing, though. Congratulations on the baby boy!

March 8, 2010 at 8:48 PM

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