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

First trial of Bananas

Well almost 3 months of elemental and we're now trying to find "safe" food for Abinadi to eat. (We're going to go at least another couple weeks if not more before we start reintroducing food to Enoch) We first started with Smarties candies. A food many Eos kids find safe because it's all artificial and broken down forms of food, but nevertheless Abinadi started refusing his formula instantly and we had to stop it. Then it was strait sugar to make certain he doesn't have a sugar intolerance, but he didn't like it well enough to eat enough to make a true judgement but he seems fine on small amounts of it. For those of you who don't know, you build a safe diet by taking ONE food, and only one food and trialing it for AT LEAST 2 weeks. More if you question symptoms, or some doctors expect longer for different foods or to scope between trials. The drs here in AK are VERY conservative when it comes to scoping and refuse to scope younger children, and mostly will refuse to do a scope any sooner than a year apart. I'll be curious to see what different treatment we get in CO. You must eat the food everyday for those 2 weeks, and if no symptoms YEAH! You have another safe food to eat. If symptoms arise you pull it and wait for the body to recover before starting a new trial.

So that leads us now to our first official food trial. We chose bananas because they were a food he used to love. First bites not so good. He cried that they were YUCKY, and it was obvious that he didn't remember how to chew or use his tongue, and he didn't like the texture. A common problem that arises from being entirely elemental and not using those muscles. But we continued on and with coaching from me we've been able to get 1-3 bites of banana in him daily. I want to get more than that but he just cries that he doesn't want it. He will need feeding therapy but we need to get at least some safe food for him first.

I'm afraid he's going to fail bananas though. No obvious allergy signs to bananas, but little problems have started creeping up. He's not sleeping well, he has more saliva, is coughing again and it's increasing everyday. All signs that his reflux is getting worse. But that all could just be because his body is readjusting to having food again. Or that his seasonal allergies or asthma is bothering him. All things that suggest that we have to push through and see what happens.

I hate this waiting game! I hate just waiting for the day that he starts vomiting, stops drinking and everything goes downhill. I feel like I'm a terrible person just waiting for that day, but we have to be certain. To make matters worse he's started getting violent today. You may not think that's anything but when you watch your child battle with a disease daily, you start to notice and learn there are emotional signs and symptoms that show up, and who can blame them? You'd be emotional too if you constantly felt ill.

I'm probably going to extend the 2 weeks to be certain the bananas are safe if no other symptoms arise, but I feel like my life has become a detective novel and I am obsessed with watching and looking for any clues or problems that might or are arising. It's tiring! *SIGH*

Here are my 2 elemental boys during snack time after a hard day of play. This shouldn't be ANY child's snack time. :o(

UPDATE: Bananas were a fail. It took almost 2 weeks to have diffinitive obvious symptoms to make me pull the food, and sadly even though he's been off the food for almost a week now his symptoms kept getting worse. Now I know why I was never able to pinpoint which foods caused the problems.

2 comments:

The Lee Clan said...

I can't even begin to imagine what you guys are going through. Just know that you guys are in my constant prayers. I Love You Guys so much, and can't wait to see more of you once you move back to CO.

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

Thanks for the thoughts and prayers. It will be great to see family again. Isabelle loves seeing the pictures of all her cousins and is so excited to get the chance to meet them all. Love you guys too.