a) Spending two and a half weeks reading and re-reading medical articles until I felt confident I understood them (I thought legalese was bad, but medical mumbojumbo is 10x worse!),
b) Spending three days agonizing over the wording in the composition of a letter and info packet I composed to our pediatrician about what I'd found there,
c) Conquering my fear of confronting a medical professional and actually delivering the letter. The last one was not as easy as it sounds.
After that it was easy. Our pediatrician was very receptive to what I'd found and totally assuaged my fears about sending her the information packet. She made me feel like we were a team figuring this out together (which, duh - we are, but somehow I never thought of it that way). This is why we adore her!
After that, she magically got us an appointment at the Children's National Medical Center out of DC in January, and then magically got it moved to this past Tuesday. We met with Dr. Mansoor there, a physician familiar with the condition I had researched, Food Protein-Induced Enterocolitis (FPIES). She was very understanding, very sympathetic, and very quick to let us know that Luke lined right up with FPIES when it came to his rice and oat reactions.
We are now equipped with a letter to take to the Emergency Room with us if he ever accidentally ingests anything containing rice or oats that will help him to be properly treated, since FPIES is rare and can be mistaken for other issues.
Children's National also provides in-office food challenges at the DC facility when it comes time to try rice or oats again with the little man in the future (most kids grow out of FPIES around 3 years of age). They place an IV before they even start the trial so that if there is a reaction, there is less danger of the child going into shock or having organ failure (yep. I said organ failure. So all of those 'should I take him to the ER' feelings when he had the oat reaction? I probably should have given them more credence).
We also figured out a possible misstep in our previous food trials. Pears was our 3rd food try, and I thought they were ok. However, everything we tried subsequent to pears failed, with the same basic symptoms (except for apples, which were trialed on their own because he would eat them on their own). The other items were mixed with or fed on the same day as - you guessed it - pears - in various quantities to make it easier for him to eat them or to round out a feeding. Now that we've found that issue, pears are off the table, the little man is much happier, and we are pretty much back at square one, with the big difference of feeling like we have a direction to be going in.
I am ready to try another round of foods. The little man is ALWAYS ready to try a new food. He loves to eat, a blessing in itself since food has caused him so much trouble so far. I feel hopeful about making some progress now, and comforted that there is someone who knows what is at issue here and is now on our team to help and support us.
A gigantic special thanks to the friends and family who fasted for or remembered our little fella in prayers. I don't think this would have happened so quickly without that special support. We love you! We miss you! We can't wait to see you in November!
And another extra special thank you goes out to Mr. Clean, who attended a 6 am meeting the day of the CNMC appointment, came home to pick us up at 8, drove us an hour through horrendous traffic to attend the appointment with us at 9, drove us back through traffic, dropped us off, went back to work, left work for scouts, did the scout thing, drove back to work again to finish up, and then finally got to come home. He sacrificed a lot to be there with us on such a busy day (during busy season!) and still fulfilled all of his other obligations too. Lots and lots and lots of love to a wonderful husband and father.
