At the moment I am spending about 5 hours a day ( his 2 hour nap and 3 hours after he goes to bed) researching about FPIES and Fructose Malabsorption. In terms of the FPIES it seems like 90% of the information are just other blogs like mine. However, they are a great resource as those mums have been dealing with it all a lot longer than me. I have only found one other mum dealing with both things as she is at the start of her journey too.
So for now it's all a guessing game.
Once you have seen a severe reaction to food, having to call an ambulance for Noah and then spending ten days in the hospital being one of them, it's difficult to want to try new things. Having said that, due to his aversion to swallowing anything already I am keen to fine something, anything he can snack on in order to maintain his treatment with the speech pathologist at the Children's Hospital. You cant really have a play picnic with no food.
Unfortunately the list of "fail foods" grows longer and longer and we are yet to find anything at all that he hasn't had a reaction too.
I truly believe, or at the very least hope desperately that we will find something soon. Despite not wanting to swallow anything thicker than liquid, he does reach out for food and puts EVERYTHING into his mouth so what he has could not be described as a true oral aversion.
BD (before diagnosis :-)) I would try every type of puree and table food to entise him to eat. When I look back now I think a lot of him not wanting to try was the pain he felt when he did eat something he had a reaction too. He learned quickly that food was not his friend.
So now I search through resource after resource trying to first find the acceptable food for a fructose malabsorption then cross check anything I find with the mums and their blogs to see if maybe it might be a good food to try with Noah. It's looking like Millet, quinoa and maybe even carrot might be our first port of call.
Once Noah is stable and (finally) of an acceptable weight (9kg for a 21 month old is very tiny!) then maybe we can look at some trials. But for now I am thrilled he is getting all the milk he needs through the bit he drinks and his tube, it only took 14 months to get someone to listen!
