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.

The Confirmed Diagnosis or Lack There Of.

We have known that our kids have food allergies before we ever left the hospital with all of them. Obviouse signs that they couldn't tolerate formula. Further testing eventually revealed that all of them had non-IgE food allergies found with patch testing. In simple terms: food allergies that effect their digestive system, not anaphylactic. With Isabelle it was simple. Found out what she was allergic to, removed those foods from her diet and viola, she was a MILLION times better within 2 months. I couldn't believe it, it was like night and day.

With Abinadi, it wasn't so simple. We removed known allergies, tried formula after formula, and he still wasn't a 100% better. So we found he had asthma and started flovent as best as you can in a baby and suddenly a lot of his vomiting stopped as well. After that point we had seen a GI, done a scope and tried another formula and he was doing better. But slowly with more and more foods intoduced and as more time passed by he got sicker and sicker again. Back to the GI do another scope and NOTHING. Signs of damage, but no obvious cause of the damage. (We later found out they only took one biopsy for each location, which only gives a 50% chance of diagnosing an eosiniphilic disease.) That is when we found out about Eosiniphilic Esophagitis and noticed that he fit the symptoms and how he responded to treatment exactly as the disease does. But we didn't have a confirmed diagnosis. So we decided to take things week by week.

By this time Abinadi was vomiting every 3 days with no obvious reason why. He was retested for food allergies and it was all inconclusive, so we cut out every questionable food and it helped...a little, before he got worse again. Every week we were pulling more foods out of his diet yet he was still so sick that we eneded up in the hospital with dehydration and failure to thrive. He was loosing weight constantly, wouldn't eat or drink, gagged on everything, vomited every 3 days to the point where he was dry heaving for hours. Couldn't sleep and a million other horrendous symptoms no child should endure.

We doing things step by step, changing reflux meds, put him on elecare and neocate, cutting out foods, tried multiple other meds, and steroids which helped but never solved the problem. Finally we got to the point where we had to do something drastic and fast. That was the decision to pull ALL food from his diet and put him on an elemental formula ONLY diet and an adult dose of nexium. It was like night and day. It took a couple months to get enough calories in him, and to find a balance between the constipation and formula causes and meds...but eventually I got to see my boy again. I can't tell you how heart reanching it was that day that I noticed that my boy was happy again. That his symptoms had resolved and I could see that twinkle in his eyes again. It still brings tears to my eyes to remember that moment. To realize that I couldn't remember how long it had been since I had seen the personallity of my little boy. I had him back. And I will EVERYTHING in my power to keep him this way. No matter what that means.

That is when we had the conversation with the GI dr about his "diagnosis, or lack there of" She finally admitted to us that in her heart of hearts, that this was what he had. An Eosinophilic Disease or a rarere sub set that hasn't been categorized in literature yet. She had no way to prove it and we can't prove it. But it fits, it makes sense, so we'll just move forward with what we know and treat him as we can.

But I journey didn't just continue here, it got worse. We started to notice all the same symptoms and problems in Enoch that we saw with Abinadi. Actually at an even worse and faster rate. So we tried many of the same things and finally got to the point where it only made sense to go to a formula only diet with him as well. He hasn't been scoped at all yet. The drs didn't feel comfortable scoping on a child so young especially when even after a scope they didn't think that no matter what the results if it would change how they treated him. So we're taking it day by day and hoping someday we'll have "official" answers or diagnosis, but if not, that's ok. We'll still do what ever is needed to keep our boys healthy.