LIVING

With EoE, Allergies, Asthma and a G-Tube

EoE, It’s in the family

I had mentioned not too long ago my niece Ellie was recently diagnosed with Eoe. Here is her story written by her mom.

My daughter, Ellie, was diagnesed in mid-July, at age 2, with EoE.  Her diagnosis suprised me because she does not suffer from the “typical” EoE symptoms.  Ellie was born with a cleft soft palate.  Early on she was on reflux medicine because she constantly spit up; however, once she had her repair surgery, the spitting up stopped.  Ellie has always been a good eater, especially compared to my older daughter.  At 14 months, , Ellie had her first, and only, “true” allergic reaction.  After one lick of cake batter, the area around her mouth broke out with hives.  I had her allergy tested for the top eight.  She reacted to eggs and peanuts. For reasons, I cannot remember, I felt like she also had a milk allergy; however the skin test came back negative.  By testing time, Ellie had already started soy milk and liked it so much, I never switched her back. 
Ellie has never had a solid bowel movement.  Her butt is and always has been red, had sores, and irritable.  Though she was always a 12 hour night time sleeper, starting around Februrary of this year, she began waking several times a night.  Around this time, too, Ellie’s eczema, which we have battled since infancy, became a permanent fixture.  I have tried four steroid topical creams but none have worked.  Ellie has asthma, but it is only noticeable when she is sick.  She is a thriving child that does not choke, vomit, or ever appear to be in pain. 
So why have her go through an endoscopy and colonoscopy?  I had been telling her ENT that I believed, as a mom, that she has more allergies because of her constant diarrhea, sores, etc.  Of course, I mentioned that my brother and two nephews have EoE.  My concern was that she had EG, EGE, or EC, but not EoE.  After being referred to a local GI and being scoped, I learned that I was wrong, Ellie does have EoE.
After her diagnosis, she went egg, peanut, nut, wheat and milk free.  Blood work indicated a wheat and milk allergy, but the skin test did not confirm.  No other allergies were confirmed with a skin test.  Since taking her off wheat and milk did not clear her eczema, last week I removed soy from her diet.  To my excitement, her eczema has improved tremendously. 
I am still confused since she is not testing positive for many food allergies, but I am hoping to get a greater clarification when I meet with the doctors at Cincinnati’s Center for Eosinophilic Disorders (CCED) in September.
When Tina called me with Ellie’s news I was so upset for them. It angers me that kids are dealing with this and there is no cure or clear answers for anyone yet. We definitely know that EoE is in our genes. Leads me to wonder what will this disease do when my boys have kids. Tina doesn’t have EoE but could she be a carrier of the gene like women do for colorblindness. Will Tina’s other daughter carry the gene? There are a thousand questions and I hope someday soon we get some answers.
Thank you Ellie, and Tina, for sharing.

August 16, 2011 Posted by | LIVING | , , , , , , , , , , , , , , , , | Leave a comment

   

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