Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Sunday, August 8, 2010
Speaking of support, part 2
My name is Suna and I'm from Australia, my little fella doesnt have FPIES but he does have the severe mucous stools and diarrhea and is on a limitted diet and neocate. I just wanted to let you know that we have an active yahoo neocatekids support group here in oz and we used to have a lady post a few years ago from the U.S.A whose little girl was severely allergic to corn and the starches and she ordered the british or Australian neocate which apparently doesnt have the corn syrup solids in it and her little one finally began thriving, it was a big hassle getting it in but may be something you can investigate if the hemp stuff goes pear shaped. You are an amazing Mum and I wish you and your little one all the best.
Love Suna in Oz XXX
Again, more support- from people we don't even know but know how hard it is to have a child with multiple food allergies and want to help. There is a connection with these mom's...when you've been through/are going through such a difficult thing with your child. No mom wants to hear of another child having to endure this, but it is so helpful when we can share our experiences.
Could you imagine? Neocate made without corn syrup solids that my little man can thrive on?
So, I found this: http://www.nutricia.com.au/clinical/neocate/neocateadvance.aspx
and sure enough, no corn syrup solids- it is GLUCOSE. This could potentially come from corn (as dextrose does)- or maybe not, being that it is not the USA. I will find that out but even so- it may not (and shouldn't) be an issue when it is strained down to that level. AND the other bonus- glucose is a carbohydrate source his body can absorb 100%- this is broken down ready for cells to absorb/utilize...he doesn't need enzymes to break it down. This product could potentially meet so many of his needs....
Now to get a can.....