My daughter Hannah was diagnosed at 11 months old with EE. She would wake at night screaming uncontrollably and couldn’t lay flat on her back. She would drool out the side of her mouth and after we fed her baby food she would start arching her back and going into these strange 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. Finally we had a diagnosis.
She started on Elecare along with food. After three months they wanted us to start the elemental diet but we were hesitant about taking our child off of food. We waited six months and then went to Cincinnati. Dr. Putnum also told us to start the elemental diet, which we did as soon as we got home. Four months later, after being on only elecare, she was rescoped and her count dropped dramatically. She now only has 1-3 eos /hpf. We added chicken and potatoes and then pasta. She wasn’t very interested in eating. I think she was getting bored.
Just recently we had 4 weeks of her being very sick with respiratory illnesses. Finally, after adding Prevacid we seem to be making a huge turnaround. She is doing well and will be scoped again in January. When in Cincinnati, her RAST, skin and patch were all negative. We don’t even have definitive foods that she is allergic to! I think she would just love to eat again like a normal child. When she sees us eat, that is what she wants. She throws temper tantrums and it’s getting worse. When she was younger the bottle was fine and she didn’t complain. It is just heartbreaking.
That is our story. 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!