Saturday, March 12, 2011

Eosinophilic Disorders

I mentioned in the last post that Dr. W and I discussed the possibility of Silas’ problems being caused by an eosinophilic disorder.  At least once or twice a year I have someone bring up the topic and ask me if the doctors have ever considered that as a possibility.  I always tell them that I asked about it years ago and GI #1 said that wasn’t it – but now I’m not sure that he actually tested for it.  We see GI #2 in a couple weeks.  I am going to ask for the exact eosinophil counts from Silas’ previous biopsies.  If they’re not on the reports, I am going to ask for the biopsies to be reread and the eosinophils counted.

There are several different disorders that involve an overproduction of cells and can lead to someone reacting to numerous substances – food and non-food.  Over the past year, we have pretty much ruled out one of these – a mast cell disorder / mastocytosis.  One of the main medications used to treat this is Gastrocrom.  Silas reacted to the Gastrocrom.  Also, Dr. I (Immunologist) tested Silas’ tryptase levels, and they were not elevated (which they should be if it were a problem with the mast cells).  Eosinophilic disorders are along the same lines, with too many eosinophils somewhere in the body.  The one getting the most attention these days is Eosinophilic Esophagitis (EE or EoE).  It involves too many eosinophils in the esophagus, but the extra cells can be located anywhere along the digestive tract.

As far as treatment…  They begin by seeing if they can find an allergic cause (prick tests, patch tests, etc.).  If allergies are found, these items are removed, and hopefully the problem is solved.  It becomes more complicated if allergies cannot be found or if the child reacts to an abundance of foods.  If this is the case, the child may have to be put on a feeding tube and given elemental formula to give the digestive system a break and get rid of the extra cells.  Once all of the extra cells are gone, foods can be reintroduced one at a time, with the hope that you can find something that doesn’t trigger a reaction.  Some people end up with 15 or so foods they can eat.  Others end up with only one or two – or nothing at all.

At this point, Silas eats mostly chicken, millet, rice, and white potatoes or potato chips.  These things bother him the least – but they still cause him pain.  And, he cannot even eat these few foods without taking three medications daily.  That is another interesting thing about the Eosinophilic disorders.  They’re not sure why, but Singulair can lessen some people’s symptoms.  Silas has been on Singulair for a while now.  Not for asthma but because it helped his abdominal pains.  When I told the doctors this, they just looked at me like I was crazy.  Maybe I’m not so crazy after all.  (Well, maybe just a little.)

Here are some of the most helpful links I’ve found concerning eosinophilic disorders:

What Are Eosinophilic Disorders? - Here is an easy-to-read explanation of the disorders.

Life Without Food - This is written by a child who has the disease.

I will end with an excerpt from an article I found here.  It’s from a piece titled “In Your Own Words” by Michelle Racioppo.  While we do not know that Silas has an eosinophilic disorder, so much of this article mirrors our daily lives (though Silas does not have a feeding tube).  Reading the last paragraph brought tears to my eyes as I thought of Silas at his own birthday party watching everyone else eat the Spiderman cake he chose - knowing he would not be able to eat any of it himself.

This disease has more questions than answers. It truly seems so unnatural to ask a child to not eat food. To trial certain foods and then have to take them way again – It is absolutely heartbreaking…  But it is him who has endured the pain, the tests, the medication, the surgery, the food deprivation, the cravings, the Everything. It is him who is our Hero. I am humbled and honored to be his mother. We have watched him with his quiet strength, develop in his faith, grow in his character, shine with empathy for others.

If you saw Sam, you would never know unless we told you that he has this disease. You would surely never guess he had a feeding tube in his stomach. He runs, plays, wrestles like all 8 year old boys do. We are grateful that he “looks” and “acts” so normal. We are grateful for all of the “normalcy” he does have in his life: his friends, his brother, his school, his grandparents, his love of baseball and video games.

However, part of what children with this disease can face is discrimination, because they do look so good on the outside, some find it hard to believe they are really sick. These kids need our compassion and understanding. The damage and pain is ravaging them on the inside, in a place you cannot see. But live with an EGID child and you will know the truth. Hold them, as they cannot sleep at night because of the pain in their stomach. Follow them as they reflux and run to the bathroom. Watch them as they play hard outside and then collapse on the couch saying ”mommy my tummy hurts so bad!” Wait for the phone call (for the third time this week) from the school nurse to please come pick up your child as he is too sick to stay. Observe them as they fast for their next endoscopy procedure. Grieve for them as they put their face in the plate of family dinner that they are not allowed to eat, but just want to smell. Cry when they decline their best friend’s sleepover because morning will be too hard to not eat favorite waffles. Celebrate at a Birthday Party until you realize everyone can eat the Pizza and Cake, except for one. Then you will know. You will know the grief of watching what a child with this disease lives day in and day out. It is courage defined.


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