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

Isabelle Allergy Results

We had Isabelle retested for her food allergies. It was a torturous experience! 50 skin prick tests and about 35 patch tests. Which for the week prior and during they are not allowed any medicine, not even Tylenol for the pain. The wonderful news is that she is growing out of some of her allergies. Yeah!!!! The picture is from 4 days after the test and a bath so imagine what it looked like before!

Now what does that mean you ask? Well it means that we get to take this next couple years to slowly reintroduce the foods that she was allergic to.

Does this mean she can start eating all the foods she couldn’t before? No, since she has been off of the food for so long, it may take a long while before her body can tolerate the food, so while she is no longer “allergic” it does not mean she can tolerate it yet. We are going to start with apples and then forms of Soy. Which for different reasons could take the entire year.
Here’s the breakdown of what she’s allergic to:
Green Bean
She is also still lactose intolerant, but the doctor thinks she is old enough to try lactaid before she has dairy products to be able to eat it on rare occasions.
She is also severely allergic to cats and mold.

The doctor wanted to put Isabelle on an everyday allergy medication, Singulair. It helped her immensely until she started having a “mood” reaction where she became severely depressed with many other behavioral problems so needless to say that option is out!

Well that's the catch up of our family. Hope you all are doing well! We love and miss you all!

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