When the alarm went off this morning at 4:45am I couldn’t
believe it was finally time to go! We got everyone ready and started our 5+
hour to the allergist who was going to hopefully
give us a diagnosis for our little girl.
After a long trip and
being slightly confused at the time difference we made it to our
destination! We had an hour to spare again,
time change messed us up and so we went shopping.
We were literally a block or so from the doctor’s office so
when the time quickly approached, we piled back into the car and drove to
Kaneland Allergy Clinic. My stomach was in knots.
We were immediately greeted by Dr. B and she was amazing
from the get-go. SO impressed. She
knew we were driving all that way, and had to pay out of pocket, so she cleared
her whole morning and we sat in the waiting room and discussed everything while
Sophia got to play.
I have a Sophia binder: a whole binder devoted to all her
labs, hospital notes, test results and food symptoms. Dr. B looked over it all
and said, “This is classic fpies, and this is classic fpies and this…and
this….” She went into great detail about FPIES and asked some pretty amazing
questions about things I wouldn’t have thought about.
We went over all her food fails and made a plan of what
foods to trial next and exactly HOW to trial them. It’s definitely a process! I
will get into that more after I go over the notes again.
So now (and kinda again, since we knew but didn’t know for
SURE she had this) I want to introduce y’all to:
FPIES - Food Protein
Induced Enterocolitis Syndrome
FPIES is a type of food allergy
affecting the GI tract; it is understood to be a T-cell mediated response in
which food is considered a foreign invader.
Everyone that loves Sophia needs
to understand that even a bite of food (not on her safe list) can send her to
the hospital. In addition to the dangerous foods we are going to have to be
careful to not keep playdough in the house and make sure that the books we have
aren’t printed with soy ink. Things we never have had to think of, we have to
think of now.
I have a lot to learn. I wouldn’t
have thought of the playdough, until Dr. B mentioned it today.
Now that we know for sure that
Sophia has FPIES we will have lots to trial, investigate and learn!
There are a couple sites devoted
to FPIES:
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