Monday, May 16, 2011

This week is National Eosinophil Awareness Week!

Remember me? It is Anjeanette, the long lost sister on this blog;) My life got busy and I had to step away from the blog and let Rebecca keep it going. I’ll never run out of creative ideas, just life was more important.

I wanted to pop back in this week and remind you that this is a very important week for our family. It is National Eosinophil Awareness Week. My 5 year old son and I both have something called Eosinophilic Esophagitis.

This is my favorite video about EE partially because it was made by our old support group in Arizona, and partially because I think the information is good in it.
If you have been following along with this blog for some time, you will have seen this post from 2009 where I described what we were going through at that point.

If you haven’t, basically EE is an allergy in your esophagus. When you eat foods that you are allergic to, white blood cells end up attacking the tissue in your esophagus. It could make your esophagus swell, it can cause scarring, nausea and vomiting, food gets stuck…it can do all kinds of different things in that part of your body. The only way to diagnosis it, is to have an endoscopy done with biopsies. My son’s and my first endoscopies were performed and the white blood cells were visible on both. But it isn’t always so. Often times, you have to wait for the biopsy results to tell if there are Eosinophils present. If there are Eosinophils present, it means you are eating a food that your body doesn’t like.

My son had an anaphylactic reaction to some formula when he was given formula the first time 3 months old because it was based on cow’s milk. He was only able to tolerate soy formula after I stopped nursing. Actually, he was on soy formula until he was 2. He slept propped up for the first 5 months. When he would eat, he always seemed to be sick. He started talking and he said more often than not that his belly hurt. After about a year of different doctors, we were finally able to have an endoscopy done and sure enough, they were able to tell by the images (and subsequent biopsy results really confirmed) that he had EE.

We wanted him to feel well so we switched him to elemental formula only.  No food was eaten at all at first. Elemental formula is formula that is considered medical food. They have broken it down so far that it is basically just amino acids. But in the process of making it fairly non-allergenic, it also becomes so nasty tasting. Blech. After he lost weight because he didn’t want to drink the formula, we quickly got an ng-tube for him. He got his nutrition through a tube in his nose. He was three at the time. Switching him to elemental formula made him not sick. We like when he is not sick! We knew we were on the right track.
Isn’t he cute? I think getting the ng-tube was the best thing for him and for us. It is hard to watch your child not feel well chronically.

He was able to do so much. But it is hard having something taped to your face and dangling down. It snags on things. Kids are mean. Heck, adults are mean. We accepted that this was going to be a long road so about three months after he got his ng-tube, we switched it over to a g-tube in his belly.  
Life really has gotten so much better since he got his g-tube.
The plan for his diet changes every time we have a new endoscopy.

We figure out if Eosinophils are present and from there decide to either add more foods to his diet, or take some away.

Currently, he is avoiding: Soy, Milk, Barley, Fish and Shrimp, Bananas, Tomatoes, and anything from a four legged animal (no beef, pork or milk from any animal). As I mentioned earlier, I also have EE. My main allergies are: Wheat, Dairy, Lettuce and Oats. As a family we all avoid these foods for the most part. My older son does drink lots and lots of milk and both boys and my husband do eat wheat. The tricky part is that since my son avoids barley, that also means anything made with enriched flour. Enriched flour is pretty much used in most ready to eat foods.
After each endoscopy, we refer to allergy testing to see what foods to introduce or to take away. There are three types of allergy testing we have done at different times. RAST test is where they draw blood and see what your body is immediately allergic to.
There is a prick test.

They make up liquid solutions containing food. They take a clean poker like the one above and put them in each solution and prick your back. We wait for a reaction to the food.
Generally, they do a lot of different foods at a time, depending on the size of the kid and how bad the allergies are.
And there is a patch test.
They take foods and make pastes out of them. They put them in these little metal cups and tape them to your back. You wear the patches for 48 hours without getting them wet. After 48 hours, you take the patches off and check for reactions on your skin. You check again after 72 hours.
As you can imagine, your esophagus is not the same as your back. So these tests are just a pretty good idea as to how your esophagus reacts. But you can’t really do a patch test in your esophagus to find out for sure how your body reacts to it;)

To find out more about Eosinophilic Disorders, check out APFED. You can also donate to CURED Foundation.

Pop back in later this week and I’ll show you what is involved with tube feedings.


Heather said...

I can't express to you in words how I felt while reading this post. I had no idea you had EE in your family. I'm almost 30 and was just diagnosed this year. I have a wheat allergy and have difficulty with dilations because my esophagus is extremely damaged (very high risk for it to rupture completely). I can't imagine having to watch my child struggle with this also. I have so many questions for you but will wait until the end of the week...

"S" and family said...

What a sweet, brave little guy! Your family must be so strong.
Thanks for informing us about this.

Michelle said...

Oh, your sweet, sweet, baby! Oh, you strong, strong Mommy! I have never heard of Eosinophil and I'm sorry you all have to go through so much. Thanks for the post, I'll be reading all week as I always do.

רויטל וייס said...

thank you for sharing your story.
keep holding on, you've got a gorgeous little boy.

RootsAndWingsCo said...

This is exactly what this week is about...awareness. Glad I maybe touched a couple of lives while bringing something so close to my heart in to yours.


Andie D. said...

I've been following the blog for awhile and was so excited that you were mentioning EE. My son (3) has EE too and while he's not on a g tube its still a really hard road! Thanks for spreading the word!