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.

Thursday, August 18, 2011

Feeling Quit Left Out

You know that pain you felt when you were a little child and got left out of a game or slumber party? Well I can tell you from personal experience, in a similar situation, even as an adult, it still hurts.

When you have food allergies, especially when you have children with food allergies you face so many situations where you are left out because you can’t have the food. It happens daily in a child’s life. It’s hard but you learn to survive because you have to. The hard part comes when you find situations where it’s just not safe to attend. People don’t realize that food gets EVERYWHERE! And how easy it is for a child to touch a toy, or a table or another child and then the food allergic child then stick their hand or that toy in their mouth and they are then sick. We are SO blessed that our children do not have anaphylactic food allergies. I thank Heavenly Father everyday for that blessing, but it still doesn’t diminish the fact that my children will get sick if they come into contact and accidentally ingest or are covered with a known food allergen. And every place we go we have to weigh the risks of whether or not it is safe enough for us to attend. I don’t feel bad about that. It’s our life, it comes with the territory.

But I’ve been having a hard few days. Uriah’s gone with the military again for the next couple weeks and I just need some socialization. You’d think I’d be all set. The ward is having a young family activity…the only problem, it’s an ice cream social. And in the safety world of food allergies, that’s a big no no for little toddlers who can’t keep their hands to themselves. I don’t have any bad feelings towards the people planning it. I’m certain the thought never entered their minds that it automatically excludes us. But the pain is still real, and it still hurts being left out.

It’s hard enough knowing how often we don’t get invited places and my only guess is because the hosts don’t feel comfortable with our situation, but to add on that we CAN’T attend something is just as hard. Why do we as Americans are not capable of having fun without food being the focal point? It’s not fair and it’s painful being the one left out….just saying.

I just wish out of all these people who know us and know our situation, someone would have thought that maybe it’d be nice to plan something everyone can do.

1 comment:

Jim, Becky, and Kids said...

Oh Kaelynn! I don't know what to say, but I wish I could reach through the computer and have you over for a food free playdate!