Well after 3.5 long weeks of waiting i finally heard from my dietitian and we have come up with a plan for Abbey. A big problem Abbey has had since she started drinking goats milk formula is that she has been seriously constipated. So bad that if she wasn't reacting to anything and having diarrhoea, she would have 3-6 days of nothing and then be in so much agony pooing it is like helping her through labour.
Apparently this can be another form of reaction in kids with FPIES and my dietitian wants me to get Abbey off the goats milk formula. We are going to try soy formula first and just slowly add little bits of it to her milk until she is having a full bottle.
We are really hoping she doesn't react to this formula, but if she does there is a type of formula called Pepti-Juniour for kids with protein allergies and we will have to get her onto that. I did try that with her back when she was 7 months old and she hated it! I tasted it myself and it tasted like poison. So hopefully she will be ok with the soy formula and not hate that too much.
After we have gotten her onto another formula and if her poo is back to normal we will start trailing her with solids.
I am so happy to finally have a plan. But i am also petrified. Soy can be a huge trigger with some FPIES kids and because Abbey has never had it we have no idea how she will react. I am going to give her some later this afternoon when she has her next bottle and i am really hoping it doesn't end up in disaster. Eeeekkkk