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.

Friday, July 22, 2011

The Perfect Example

Say you see a man coming out of the movie theater carrying an empty tub of popcorn. He's talking about the movie he just saw and you watch him throw away a movie ticket stub. What's the first thing that enter's your mind is that obviously he just got finished watching the movie he's talking about.

Yet upon closer inspection the person selling tickets doesn't remember him, neither does the ticket taker and the concessionair. He also paid in cash and didn't want a receipt (you know to save the planet and all that.) No one in the movie theater remembers him...it was just too dark. So we seem to have NO proof that he actually watched the movie. But are we pretty sure he watched the movie? Yes!

If it waddles like a duck, and quacks like a duck...it's a duck.

Now could this guy have us all fooled and he never trully watched the movie? Sure. It's possible but not likely.

So when it comes down to it there is a chance our boys don't have an Eosinophilic Disease. But if not that just leaves the probability that it's a rarer disease or a non categorized subset of the disease. Either way that still leaves us in the same spot with our 2 boys having severe non-IgE food allergies to too many foods that they cannot sustain a healthy diet. And the fact that they will not grow out of it, we can only hope to build a large enough diet of safe foods to eventually be off the formula.

2 comments:

natesarah2@msn.com said...

I'm so sorry to hear of your struggles. You will be in my prayers. If there is anything I can do from a distance, please let me know. Hang in there! And vent whenever you need to, don't hold it all in, or you'll explode! Hugs to you and your family!

Uriah, Kaelynn, Isabelle, Abinadi, and Enoch said...

Thanks for the sweet thoughts. I've been too close to "exploding" that's why I've started this as an outlet to slowly release the pressure. LOL! Thanks for the prayers. :o)