Sam's Story
From the time he was about two months old, Sam had severe eczema. At first
it bothered us more than him, but eventually the itching and the redness
were painful to watch. When he started eating solids, he had a perpetual
red ring around his mouth. Our pediatrician kept telling us not to worry... "Babies
just get eczema," "There's no cause, and no cure," "Try
an oatmeal bath." Nothing worked. I knew there had to be a reason
for his eczema.
During a desperate visit to our wonderful dermatologist, she suggested
that I cut nuts and peanuts out of my diet (I was breastfeeding).
The eczema cleared up slightly, but Sam was still bothered. I then
slowly started eliminating almost every possible allergen out of
my diet - milk, soy, eggs, etc. It got to the point where I was eating
chicken and lettuce - great for taking off the baby pounds, I suppose,
but very frustrating! Sam's eczema did clear up dramatically, though,
so I became convinced that it was related to a food allergy.
We finally saw an allergist when Sam was only six months old. After
a skin prick test, he was diagnosed with a milk, soy, and fish allergy.
I asked for a blood test to confirm the results and those results
were surprising - negative to milk, soy, and fish, but a strong positive
to nuts, peanuts, and peas. It was difficult to explain the results,
and frustrating to not have a definitive answer (skin and blood tests
are often difficult to interpret in children this young, but rarely
are they completely opposite). That frustration led us to St. Louis
Children's Hospital. When he was 8 months old, we got our first confirmation
that he had a severe peanut and nut allergy (in addition to peas
and cats).
Sam is now almost three years old, and we have additional confirmation
of allergies to garbanzo beans and mustard, and suspected sesame
allergy. With all of his allergenic foods, he gets instant, localized
reactions if he is exposed, even in small quanitites. The number
of reactions have certainly decreased as we are "honing in" on
his allergies, but ingredients still get overlooked - a "may
contain peanuts" statement that is not near the ingredient listing;
a BBQ sauce that has mustard hiding in a "spices" category.
We are lucky that Sam has never experienced anaphylaxis, but based
on the advice of our doctors, we carry an epi-pen with us at all
times.
I long for a day that I can just head out the door with Sam to the
park and not carry his epi-pen and benadryl with us; I long for a
day that I can walk the aisles of a grocery store and not annoy the
people behind me as I read every label of every food I purchase;
I long for a day that we can go into a restaurant and I don't need
to ask about every ingredient in a seemingly-simple grilled cheese
sandwich. But I also want to ensure that Sam remains the happy, healthy
child he is today. For me, that means being an advocate for him at
his preschool, teaching him how to eat responsibly, educating my
family and friends about how they can help keep him safe, and flooding
myself with information and resources. I'm hoping that the Central
Illinois Food Allergy Network will help serve those purposes, not
just for my family, but for the many other families of children with
food allergies in this area.
