Updates and posts have been few and far between and not at all what I was hoping. I'm going to do an all inclusive post here and then try to go back and post some of the new articles and news that have come out recently. I know I have a bunch saved.
Kaylin had a really tough time this year starting in Feb. and we removed a handful of foods which seemed to initially help but she was feeling sick and throwing up more and more. Nothing had changed in her diet and her medications were the same. I finally pushed for her endoscopy to be done a few months early. Great news is, it's her best scope ever! Bad news was, she was still throwing up. At her follow up appt. they added Miralax into the mix and it has worked wonders. At first I thought the Dr. was crazy and that it was something more but she is now at the healthiest she's ever been!
She's continuing with the Pulmicort Slurry and Nexium. We will also continue with her diet. She is off ALL dairy and limited soy, egg, pork and rice.
My son, Gavin, was very recently dx'd with EE. Daughter Grace has a Congenital Heart Defect, so I feel like I'm starting over again, learning a new language. I'm pretty involved with other Heart Moms in the area, and now I'm the "newbie" to the EE world- lost, confused, scared and hopeful.
ReplyDeleteI'm following your blog now, feel free to check ours out too! Hope you don't mind, but I've added Kaylin as one of Gavin's EE buddies. ;)
www.crazymarchesefamily.blogspot.com
I have read a few of your posts and just wanted to thank you for sharing. My son was diagnosed with EE almost a year ago at the age of 2 1/2. I too, just began a blog and have found it to be therapeutic. Feel free to visit (http://ahardjob.blogspot.com/) and if you would like, you can add a link on here and I will do the same :)
ReplyDeleteKim
Kim