Today was the day we have been waiting for, Kwashi was to see her new GI doctor. I have been a wreck about it for a week. So why were we to see a new doc...? Her issues were all behavioral right, says her old gi doc. Well feeding therapy were in agreement there was an underlying pathology causing Kwashi's feeding refusal.
The office visit started as usual with a fellow and a medical student. Her history and physical took almost an hour to complete. Remember this has been going on for 15 months. The doctors left the room and I paced. Looking at my husband, playing with the baby... Then the doctor came in.
He was a nice Hindi man. Introducing himself and intently examining our toddler. He didn't say much for a while. He did a physical exam and interacted with Kwashi. I could tell he was happy with her development. In children with feeding refusal the concern can point towards autism or sensory processing issues. He had no concern after interacting with our little ham. Sitting down he just came out and said it, " Your daughter has something called FPIES, Food Protein Induced Enterocolitis Syndrome." I tried not to cry... I knew this already! I have been saying it for a year! That is why I was here?! I really did try to hold it all in but I kinda stopped listening. I don't know if he went into explaining what it was but I just started crying. Every past doctor just looked at me like, WHAT?! That's super rare, she doesn't vomit to shock. No way, No How. Well crap faces I know more than you! Sad. Open I book. Do your CME on something other than the normal. Seriously. Take a MOM SERIOUS.
Not every kid will out grow their reflux, allergies, insert whatever issue your child may have by 3, 6, 9, 12 months. For 12 months I questioned the corn in her formula? Corn in her meds... Food in general. Chronic FPIES??? NOPE I was told. Impossible. "NO kid reacts to elemental formula. The corn protein is taken out." I am not going to get into detail about the conversation. Basically her doctor felt she is not at baseline and the formula is the cause of many of her food fails......... OH STING! Mommy guts are generally right.
So what do we do with this new diagnosis? How does this change the game? It doesn't. There is no test, no intervention. The intervention is removing the irritant. And that my friend is a tricky, tricky beast. I don't know how to feel at this moment in time. A bit numb, a bit angry, a bit paralyzed with fear. You would think hearing it would make me feel better, make me feel validated. It doesn't. It leads to more questions unanswered.
Remember you are your child's greatest advocate. I would have took her to the moon to see her new GI. I would spend every dime we have to make her gut a happy place... But none of that matter because time is all we have. Time and our love for our Kwashi.
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