Hand to Hold's Official Blog: Written by Parents for Parents

Let Them Eat Cake: Working with Food Allergies

Caleb enjoying his egg-dairy-gluten-soy free birthday cupcake.

This past May, Caleb turned one.  A huge milestone as this was a big year for him with one NICU stay, seven hospitalizations, four surgeries, and three trips to Cincinnati Children’s Hospital where we travel for his medical care.  We planned a big party to celebrate.  Of all the things that go into planning a party, food was a major concern.

Caleb reacts to eggs and dairy, breaking out in hives and a rash.  Skin and blood tests confirmed he was allergic.  His older sisters were also allergic to eggs and dairy, a rare trifecta of three kids in the same family having the exact same food allergies.   We now travel with our EpiPen Junior, Benadryl and also keep a spare set at home.  His older sisters have outgrown their food allergies- food challenges at the allergy clinic confirmed they could safely eat them.  Since they were previously allergic, they now have to eat eggs and dairy regularly to avoid becoming sensitized again.

It has been a challenge at home.  We can not be egg and dairy free because the girls need regular exposure yet Caleb is allergic.  We emphasize that only mommy or daddy should feed Caleb because he has allergies and is on a special diet.  We learned the hard way the importance of washing hands and faces after meals and before touching Caleb as his face broke out in hives after being kissed by his sister who had just eaten scrambled eggs.  It also reinforced the importance of having the EpiPen and Benadryl on hand at all times.  I am careful when cooking in order to avoid contaminating his food.

For the party, it was even more confusing as Caleb and some of our friends are on special diets because of their health conditions.  He is on a non-constipating diet- avoiding gluten, soy, dairy, certain fruits, vegetables and proteins known to be more constipating.  As for the invited guests, some were on a gluten-free diet too, some had a variety of other food allergies, and a few were vegans.

It brought up another question we struggle with- should we all follow his diet or should only he?  Right now it is easy as he is a baby and someone is watching him assuring he is not eating something he should not (whether it is food or not).  As he gets older, this question will be harder to answer.  Will we all be on his strict diet?  Even at parties? I do not have an answer yet.   It is a work-in-progress as we learn to balance everyone’s needs and adapt to all of our dietary needs.  I can get my foodie fix on date nights, but the everyday menu at home will be challenging.

After speaking with the venue, we opted to bring in our own food instead of having them provide it as they could not assure us of no cross contamination and did not offer any gluten-free dishes.  With some basic research on food allergies on the Food Allergy and Anaphylaxis Network  and discussing options with our friends, we were able to provide a variety of foods and labeled them so guests would be aware.  Thankfully, none of our guests had such severe allergic reactions that their offending foods could not be offered.  Many people with food allergies cannot be near their offending foods without reacting.  Often, it is life threatening called an anaphylactic reaction.  We found a local bakery, Better Bites Bakery, who could accommodate Caleb’s special diet so he could have his first taste of birthday cake, a dairy-egg-soy-gluten free cupcake.  He made a mess, but seeing him enjoy his birthday cupcake is a memory I will treasure forever.

As far as what we will do at home, I hope we are equally as successful as the party.  After a month of negotiating, our health insurance has finally approved for us to see a registered dietician .  They agreed to pay for the nutritionist of our choice because of her extensive pediatric GI experience.  Did I mention that he has some texture issues?  I am looking forward to our sessions with her.  When food equals love, at least it sometimes feels that way, food allergies and special diets can make meals a headache. Finding help with meal planning can bring back the fun and enjoyment of meals together.

Bea Smith About Bea Smith

As a nurse, Bea Smith (TX) found the roles reversed when her son was born with a congenital condition, imperforate anus (IA); he had no anus. He had surgery at two days old, spent a week in the NICU and has had three more surgeries to create an anus and to correct his spine. Diagnosed with VACTERL, an association of conditions, he also has kidney/bladder problems and had a tethered spinal cord. Bea is the mother of two daughters in addition to her son. She is adjusting to her role as a rookie special needs mom, balancing family, friends and work with a little humor and a lot of faith, chronicling it all on Caring Bridge.

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