Well, the time has come -
Even the "dream team" (Angela, Cassondra & Me) are not going to be able to keep up with this little guy.
(Who has been getting more mischievous lately lol).
He is at 40+ oz of milk a day and Nessie & Bessie (my girls) are not even close to keeping up anymore.
Me and his new pediatrician are devising a plan. We are going to try the GAPS diet and supplement with a prescription formula called Neocate. If there is any hope for him to eat, this will be it. For all you FPIES families, you can find more information here:
The GAPS plan was actually developed by a neurologist seeking to help all the children she was seeing with autism, ADHD, etc. However, more and more FPIES families appear to be having success with the diet so I would like to "join that bandwagon." (Which I by the way have no idea where that phrase came from or what it really means lol?)
Neocate is a type of prescription formula that breaks the proteins in regular formula down into 100% amino acids which are the building blocks of protein making them easy to digest. They have some fun pictures if you'd like to see more about it on a cellular level but I'm still trying to process what amino acids are and recalling 10th grade biology so I'll just leave it to you guys if you want to do more research. ;)
We are heading up to Mayo Clinic in one week so we've figured if this plan goes south on us at least we will be in a safe and wonderful place that can hopefully help us find more answers for our sweet little boy!
And for now I will keep you posted if either of these turn out to be successful for us!!
(ALSO - If anyone out there, anywhere in this blogosphere has heard of our story from friends and would like to donate milk, I could never thank you enough...I currently have enough to last us through about the end of January).