Caring for a sick child is hard enough, and I have many levels of support and coping for this.....this isn't even the hard part anymore (especially since I have built him a formula that makes his tummy happy and gives us a happy, active boy). Why do we have to fight just to get him a little help? Why does a child with a clinical diagnosis deserve so much less than a child with another chronic illness?
No, I wouldn't say our Peds GI was ready for us. They are not ready for FPIES diagnosis here. It makes me sad- sad for my little man and sad for all the other kids who could be helped by such a fine medical institute.
The GI doctor even said it herself, little man may have too complicated a case for them here....we may have to go back to CHOP. If his labs and weights, and blood in stools don't stop on this formula I have built him- they are not sure what to do. So, no- no answers....not much direction than I am already doing -- on my own. No more support than I had yesterday or the day before, or the day before from the medical community.
The support I want isn't hand-holding support. My group of FPIES mommy's help with that, my family and friends have always been there through the very beginning stages of this. The support I don't understand why is too much to ask for is support for caring for a sick child. That if he were to get sick- from a food fail or even a crumb or heaven forbid he got the flu....that I would have assurances that I have doctors that will help us help him.
Is that really too much to ask?
Does it really need to be this hard?
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