Recently I have heard a lot of moms of kids with FPIES, MPI and EGIDs talk about instinct. The burning in your gut that something is wrong with your child. Some Drs won't listen, some do listen and admit they don't know what is wrong with your child and then their are the few who listen and research and even better look at your research and together you find answers. We are lucky to have a pedi who listens and learns along with us but we still fumble along the way and our journey to find a team of Drs to work with is trying.
Seventeen months into this journey if one thing I have learnt like the other moms is to trust my instinct. I no longer need to hear a friend or someone else tell me, "yes that is a good choice to make". I do not say this to be arrogant but instead I say it because my instinct has worked best for my children's needs thus far. It has always been right and has gotten us to the point we are at today, i.e. two kids doing well on their current treatments. My family and friends have "normal" children and what works for their kids may not be the best thing for my kids.
Right now my instinct tells me that Heath is more sensitive to foods than Hayleigh is. It tells me that his medication is what is causing him to poop eight times a day all runny and mucusy. It tells me this is why his rash won't clear. It tells me that we should pull him off the medication so as not to sensitize him to foods to early as we did unknowingly with Hayls. It tells me that we have a lot of psychological work ahead of us with two kids unable to eat at parties, holidays and regular everyday school. It tells me that along with my husband we will provide the best environment for our kids and everything will be OK. It tells me that others may view the inability to eat as a handicap but we try to view it as a small bump in the road ahead, we try to place emphasis on what the kids can do not what they cannot do.
