Kylie was diagnosed back in August with a condition called EE (Eosinophilic Esophagitis). It is a condition where she experiences swelling, difficulty swallowing foods and this sometimes is in response to a delayed allergic reaction to foods. She also has anaphylaxis to oats and some severe food allergies to many foods. These two trips to the ER shed no real light on what is going on presently, however Kai’s allergist reassured us today that her asthma is under control and these symptoms that she is experiencing seem related to EE and some muscle aches with another fancy name. She is back at school and hoping to have no repeat visits to room 25 this weekend.
I haven't really talked about this until now, but I think it is time to make others aware of this rising epidemic that many kids are being diagnosed with daily. EE is one of the Eosiniophilic Disorders that specifically effects the esophagus. For more info about EE & EGID, you can check out the APFED website which explains these conditions in greater detail. Our world was rocked 3 mos. ago when she was put on a highly restrictive diet along with medications to treat this condition. I joined a yahoo support group that is growing in new members daily. These parents are the most wonderfully supportive individuals and the stories are heartbreaking for the suffering that many of these kids are going through.
Can you imagine not being able to tolerate food, to never indulge in your favorite treat again, to be on a super restrictive diet or rely on a feeding tube and nutritional supplements to survive? Think about what it is like for a child with restrictions to eat lunch at school, to hesitate to go to a friend’s birthday party because they know they can't eat cake, pizza or snacks, and how stressful a common holiday celebration can be for the whole family when you really have to consider everything on the menu. We have had to learn to read EVERY label for the ingredients, to wander aisles even in the nutritional food stores to only find one item that is o.k. to eat, to learn to cook using different ingredients, and to have to pack alternative foods when we go elsewhere to eat. My daughter and I have shed many tears together, picked one another up on those down days and have held hope for the future that she can maybe have some of the foods back one day, and not lose any others. We all work together to make life as “normal” as it can be.
There is a foundation called CURED, and if you are looking to make any year end donations, I encourage you to support this cause so that we can find a cure for our kids who are suffering from Eosinophilic Disorders. There are T-shirts and bracelets for sale, or you can do direct donations for as little as $1. Another organization that has been a great resource to Kylie is the Food Allergy & Anaphylaxis site for teens (FAANTEEN.ORG). And as you count your many blessings this year, don't overlook the most basic ones. As Kylie said to me the other day, “I will never ever take food for granted.” Continue to keep us in your prayers in the year ahead.