I wanted to update on L’s latest journey with living with eosinophilic esophagitis. From the last blog post, you know we were trying foods that eliminated the top 8. Unfortunately, after 48 hours, we ended up in the emergency room. She had a severe reaction. It was at this time, we started questioning if we were under the right care for L. After our research and talking with other families that deal with this disease, we switched to a hospital that is experienced in treating this disease.
This new hospital and team of doctors are amazing. They care about L and stay in contact with us. This is a hard disease to navigate and we need doctors that are going to walk this journey with us. It was decided that L would go on a new steroid and 100% Neocate Splash formula, no other foods or beverages. After 6 weeks, L is doing amazing with no reactions or symptoms. As of last Friday, we have weaned L off her steroids and all other medicines. Isn’t this great news?
Now, we let her body heal for three weeks before her next endoscopy and biopsies on June 30th. If all looks well during the endoscopy and biopsies, L will be able to do her first single food trial. She is hoping for potatoes but we will have to see what the allergist and GI doctor says for her to try. The allergist said they go on experience of what foods are usually not a trigger with other patients. This disease is very unique to each kid, so it is a trial and error method to figure out safe foods. We will try each food for six weeks and then do an endoscopy to see if this will be a safe food for L.
We will continue to keep you all posted in hopes L’s journey will be able to help others. Our family dynamics have changed so much since L cannot have any food. Obviously, her feelings matter to us and we want to be sensitive to doing activities with food. You don’t realize how much life in general revolves around food until your child cannot eat food.
My husband and I both continuously encourage L, praise her, and lift her up on a daily basis. She is a very strong and brave girl. Positive thoughts, lots of prayers and encouragement have gotten her through these last few months. We are in this with her!
Pray with us for good news on June 30th! Thank you!