My daughter Hannah was diagnosed at 11 months old with EE. She presented with waking at night screaming uncontrollably, she was never able to lay flat on her back. She would drool out the side of her mouth and after we would feed her baby food she would start arching her back and going into these stange positions. I finally took her to the GI doctor who said it was probably reflux. After months of no response to PPI’s they finally scoped her. That is when the dx was made. She was started on Elecare along with food and after 3 months they wanted us to start the elemental diet. We were hesitant about taking our kid off food. We waited 6 months and then went to Cincinnati. Dr. Putnum told us the same thing and we started it as soon as we got back home. Well 4 months later after being on solely elecare she was rescoped and her count dropped dramastically. She now only has 1-3 eos /hpf. They decided to start to start chicken and potatoes and then added pasta. She isn’t very interested in eating, I think she is just getting bored of it. But we just recently had 4 weeks of her being very sick with respiratory illnesses and finally after adding Prevacid we seem to be making a huge turnaround. She is doing well and will be scoped again in Jan. When in Cincy, her RAST, skin and patch were all negative. We don’t even have any definitive foods that she is allergic too! But I think she would just love to eat again like a normal child. When she sees us eat now that is what she wants. She throws temper tantrums and it is getting worse. When she was a bit younger the bottle was fine for her and she didn’t complain. It is just heartbreaking.
That is our story. I don’t have a scanner to put through a picture though I wish I could show you how beautiful she is !!!!! But I am sure every mom feels that way about their child!
Thank you for being there and helping with getting the word out!! I too, have been trying here in NY and it is tough!