Its been a long time I know! But we have been doing pretty well. Neveya has only had 2 reactions all summer!!! This is big news for us! We have been going to Milwaukee for feeding therapy since July. At this point we are just working on her compliance with foods. And next week we will go down there for the week to work on a more intensive base. Unfortunately we will be there over her 3rd birthday. But we do have a friend going at the same time with her son for feeding therapy. This will be wonderful to have someone that knows what we deal with not just on a feeding scale but also on a FPIES level.
Veya did have a weight check today and she is 22lb 9 oz. She hasn't gained but she hasn't lost either. We are not stressing on it at this moment either. We will check her again in a month or 2 but for now we are just going to focus on her eating.
On a wonderful note the IAFFPE.org has done some amazing stuff in the last few months. A few weeks ago Fallon (founder) and one of the medical advisory bored doctor went in front of the CDC to establish a ICD-10 for FPIES. (A code used to submit to insurance for the diagnose of a disease) Right now the CDC is taking public comments and if you would like to help you can go to http://www.iaffpe.org/docs/ICD10_Support_Letter_IAFFPE.pdf
. Just fill in the template and send it to one of the addresses listed.
Also take a peak at the video......
IAFFPE is pleased to release an official "FPIES Awareness Video", sponsored by our friends at Nutricia. This video will be given to pediatricians, allergists, immunologists and gastroenterologists to decrease the amount of time patient's wait to receive a diagnosis. This comes at a crucial period for FPIES patients and families. Please continue to join in and support our effort to create an official diagnosis code and research that may ultimately lead to a cure. Thank you Nutricia for your dedication to FPIES patients, worldwide. http://www.youtube.com/watch?v=uEnvlDJ1_Sg
Just so you know you might cry!!
I will try to update next week durring our stay. Have a great week everyone!