Jesus said, "This sickness is not unto death, but for the glory of God, that the Son of God may be glorified through it." John 11:4



You Are Not Alone!

We started this blog as a support to those families in Arkansas and around the country who are faced with raising a child with a life-altering eosinophilic disorder. It has been estimated that one out of 3,000 people have been diagnosed with an eosinophilic disorder. Children suffering from eosinophilic disorders have a myriad of problems. Some of which include: vomiting, diarrhea, feeding refusal, malnutrition, difficulty swallowing, and failure to thrive, just to name a few.

Could you imagine a life without food? For these children, that is a very real possibility. Many of them are on a very restrictive diet of special elemental formula. Those fortunate enough to still be eating foods are very limited as to what they can eat, and still have to drink an elemental formula to maintain a nutritionally complete diet. Not only do these kids have a restrictive diet, but many of them have feeding tubes and endure several surgeries and procedures. These children show us parents incredible strength and endurance! It is our hope that other families dealing with this disease realize they are not alone, and that more people will become aware of this disease. Hopefully this blog will be a support to those living with eosinophilic disorders.

NOTE: House Resolution 296 passed in 2007 declaring the third week of May, National Eosinophil Awareness Week.

Monday, July 13, 2009

Inhaler Propellant and Corn Allergies

Just FYI, if your child is using an inhaler and doesn't seem to be getting better after the treatment; and in fact seems worse, it could be the propellant. Abigail uses an Albuterol nebulizer at home as needed, and if she happens to need a little help with her breathing while we are out and about, we used an Albuterol inhaler. Both Albuterol, they should be the same right? Wrong. Abigail also happens to be very allergic to corn...did you know that most inhalers use ethanol (a by-product of corn) as the propellant? This would explain why time after time we would use the inhaler and I would swear that it was making her worse. Because it was! Of coarse, I countered myself by saying that couldn't possibly be since she used the nebulizer and responded well to treatments. It finally got to the point that more times than not we were counteracting the inhaler with the nebulizer until one day, I happened to catch the word "ethanol" on this side of the inhaler. By the way, Xopenex also uses ethanol as the propellant. We now have a portable nebulizer that travels where ever we go, and we haven't had any problems since. I figured I wasn't the only one who didn't know about the ethanol, and wanted to spread the word to you other mom's and dad's who might be experiencing similar scenarios.
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Thursday, July 2, 2009

Ross' Results

So, Dr. Kushner called with Ross' preliminary results. He still has mild to moderate eosinophils, but the numbers went down from 245 to 26. That is huge improvement but the disease is still prevalent. He is going to continue his beef trial along with the formula until all of the the doctors (from U.C. and Cincy Children's) meet sometime in July. They will discuss his further treatment options and get back with us. He also still had eos in his small intestines as well as in his esophagus; so this may change his diagnosis a bit, but we will have to wait and see.
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