Mothers Encouraging Mothers of Eosinophilic Children: Our Trip to Cincinnati

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.

Tuesday, September 2, 2008

Our Trip to Cincinnati

Our trip to Cincinnati was absolutely amazing! Other than the speeding ticket that we got on our way to have Abigail's patch testing read ;). Oh well, you win some you loose some. Back to our week in Cincy. On Monday, Abigail had her scope and amazingly her esophagus looked better than it ever has. However once we got the pathology results later in the week; they found eos still present. Dr. P. said that since the disease was still prevalent, he wanted to remove bananas (the one and only food) from her diet. Honestly, this was kind of a sigh of relief because we were terrified to introduce new foods. So long story short, she is drinking her Neocate Jr. only, and she may have the original Dum Dum Sucker flavors, Pixy Stix,and Smarties in order to maintain her oral motor skills. On Tuesday Abigail had allergy skin prick testing and also patch testing. The prick testing was well....horrible! She sreamed and flailed her body; wanting desperately to scratch the whelps that popped up immediately. Her testing confirmed the following allergies: milk, casein, eggs, wheat, peas, peanut, tree nuts, corn, barley, rye, mustard and sunflower seeds. Luckily however, her patch tests all came back negative. Like I said previously we removed the bananas (even though she did not test positive) because she has never been scoped on formula only. The theory is that if she has no eos present on formula only then she has the allergic-type of EE, and if there are still eos present; then she has the non-allergic type. Of coarse we will be holding our breathe for the next three months as we wait to find out at our next scope which type of EE she has. Here's to hoping that it is the allergic-type! I say this because although it is difficult to treat, it is much easier to control than the non-allergic type. I think that should get everyone up-to-date with our progress. I have attatched some pictures from our trip below.

Daddy, Mommy, Abigial, and Patches the Bear before the EGD.