Saturday, February 9, 2013

Some facts....eosinophilia

When I posted about the fast and prayer for Kyle and Aiden on Facebook, I became aware that many of our friends and family do not understand the boys' disease. I thought I might answer some question here because it is hard to find information about it online.

The boys were diagnosed officially with eosinophilic enterocolitis in August of 2011. They had both been having symptoms much longer than that, pretty much beginning at birth.

An eosinophil is a type of white blood cell that is typically found present at the site of an allergic reaction. With an eosinophilic disorder, large amounts of eosinophils are found in the affected area for no apparent reason. The most common and best researched (which is not saying much) type is eosinophilic esophagitis (EoE), but you can also have eosinophilic gastritis (stomach) or what the boys have, where the affected area is the intestines and colon.

Symptoms can include intermittent vomiting, diarrhea  pain, bloating, malabsorption of nutrients, lack of appetite and a host of others. Obviously, some of these problems create health issues of their own.

Research has shown that for esophagitis and gastritis a restricted diet eliminating all "food allergies;" which have been determined through strict elimination and reintroduction diets that can take years to fully flush out every food that can cause symptoms, can manage the disease. This is not a viable option for us because by the time food reaches the intestines and colon the majority of it has already been digested.

We do know that both boys have an increase in symptoms when partaking of dairy products and Aiden also does not do well when digesting gluten products, but further elimination diets are not seen as a viable way to control all the eosinophilic activity in their lower gut.

There is no cure. There is no treatment either. The only drug guaranteed to help with the symptoms are prednisone, a steroid. As many of us remember from high school, steroids have many complications and are not a long term solution. Both of the boys have done several rounds of steroids when symptoms were unable to be controlled any other way. On Aiden's most recent round of steroids in December, the drugs did not even make much of a difference.

Eosinophilic enterocolitis, is tricky to deal with, can come and go, and does not respond very well to drug therapy. Not much is known. Each person affected reacts differently and the only true way to measure the situation is done through frequent (every 6-12 months) colonoscopies (which is surgery and requires anesthesia)  and biopsies of the affected area. Only under a microscope can a true eosinophilic count be obtained.

We have run courses of antibiotics to try to change bacteria in the stomach in hopes of affecting change, we have introduced pancreatic enzymes to aid in digestion, we are using topical anti-inflammatory drugs typically used to treat ulcerative colitis, we also use sympatholytic medications to help control the pain, we use probiotics, and we are using anti-spasmodic drugs to try to control intestinal movement during digestion. The only class of drugs that we have not up till this point used are immuno suppressants typically used to treat Crohn's disease, which is an inflammatory bowel disease. We have started these drugs in hopes that suppressing bone marrow will control the eosinophilic activity in the bowels.

Because of the lack of research, we do not know if there is a genetic link. If you look at my family, it seems that there is. I do not know if this will shorten their lives. I do not know if this will become worse. I do not know if this could later be diagnosed as Crohn's disease (something my doctor recently suggested). I do not know how this might affect my boys' ability to function in a normal school or fulfill a mission call. I do not know if Kyle will ever be able to come off his feeding tube.

If you have any other questions, please ask. I'd be more than willing to answer them.


Teresa said...

thanks for writing this post. There is a lot I don't know or haven't understood about the boy's illness, but this helped. Count us in for your fast tomorrow!

Ami, Joel, Dane, June said...

I really appreciated this post, too. I am sad and sorry you've had to deal with so much, that your poor boys have to deal with so much. I've been researching eosinophilic disorders a little but to just try and understand a little better. Thanks for your explanation and strength.

Shara Blunck said...

Holly I am so sorry to hear about your boys. My husband has ulcerative colitis and we have gone the rounds with it, doing many of the things you described. We finally had his colon removed (which was supposed to cure it), only to have more problems after. Digestive diseases are awful. Know that your cute boys are in my prayers!

Mallory said...

You are an amazing mother for loving and caring for your boys. You seriously have so much strength to deal the lot that has been giving you. I hope more knowledge about what they are suffering can come out. Hugs!