Food Allergies: About Our Journey

Eggs, Milk, Peanuts, and Dogs are on the list of things that could possibly go very wrong for our twin boys.  Wheat, oats, and flax also cause problems for one of them.  In April of 2010 we had just left church on a Wednesday night.  Our little guy, Z, started a funny cough as we left, and by the time I drove the two blocks to our home he was struggling to breathe.  He made a hard long grunt to push through an exhale, and his chest caved in as he slowly and desperately pulled through an inhale.  Thinking it was asthma, I started a nebulizer, alerted my husband, and called 911.  I held my 18 month old baby as I watched consciousness slowly slipping away from him.  My husband remembered the epinephrine we had recently been prescribed at the pediatrician’s office.  He jabbed it into our tiny boy’s thigh.  He should have been able to scream or kick, but instead he lay limp in my arms.  Because of the blessing of my husband’s fast thinking and the epinephrine, Z quickly began to breathe better.  Then the hives had enough oxygen to come.  And they did.  That's when we knew for sure that it was an allergic reaction.  In the ambulance a blanket of hives covered his body.  His face swelled and he itched all over.  At the hospital his 18 month old body, barely 20 pounds, received an adult dose of Benadryl, epinephrine, and steroids.   He spent the night in the pediatric ICU as much to monitor the effects of drugs as the persistent reaction that wanted to keep coming.  Thankfully, the next day he came home happy and healthy again.  It was surreal to realize we almost lost him the night before.

Z and S January 2010. Two months before the big scary reaction we tried eggs and they both developed hives.  Z, above, developed a certain kind of hives that look like a sunburn. S, below, had standard bumpy hives and his right eye swelled shut.  These were taken at the beginning of the reaction, so it's not at it's full height yet.  We were off to the pediatrician pretty quickly. 

We have some theories but will never know for sure what Z ate that night at church. We do know what set the stage for it, though.  We were still very new at the whole food allergy journey. I was ignorant about how many prepared foods have hidden and unimaginable ingredients. More than five hours before church that night I gave Z and S a taste of fast food fries. I did not even consider the idea that there could be milk and wheat in fries. The doctors said that he must have eaten something at church for such a sudden and severe reaction, but that the fries probably helped get the ball rolling for the reaction to come.   Oh. The. Guilt.

Our church family was awesome, loving, and quick to respond. They held a meeting where they asked me to come and describe the warning signs of a reaction and demonstrate how to administer epinephrine.  I called it the“How Not to Kill Z and S Meeting."  We never blamed the church for what happened, especially after my own monumental mistake earlier that day.  They knew not to feed the twins, but none of us knew how many pitfalls there were in caring for toddlers with unknown allergies.  He could have grabbed another child's cup or bottle, or even found a stray crumb on the floor without anyone seeing him.  Who knows.  

I blame Allergies for what happens to my boys.
After the big church reaction I sat in an allergist’s office as he said, “They should outgrow most of these allergies by age 5,” and I replied jokingly, but with a lump in my throat:

“How do I keep them alive until then?” 

His sobering answer: “Work with a dietitian to make sure you have all of the major food groups covered as well as possible.  If you know of enough safe foods to keep them healthy, don’t introduce any new foods until we see you again next year.”  It was a punch to the gut.  We had fewer than 20 foods to work with, and just a few seasonings.  Thankfully, though, every food group was represented. 
 

S in 2010.  Mystery reaction.  This is after Benadryl, so his eyes were open again and looking better.

We have come a long way since then, and their fourth birthday is just a month away!  I’ve learned to cook their limited food list in a small variety of ways.  Homemade chicken stock, Rice Chex chicken nuggets, and my grandma’s pot roast are among some of our favorite recipes.  And they can enjoy several fruits and vegetables.  Rice and potatoes are our main and constant carbohydrates (no wheat or oats).  AND we’ve been able to try some new foods and expand their menu a little at a time. 

Once food was resolved, the social life needed addressing.  For a long time after that big reaction, I became a hermit with our guys.  Fighting an unseen enemy, we are no longer as free as we used to be.  Thankfully the Lord has blessed us with many wonderful people with problem-solving hearts. Because of them we have been able to find many safe environments for our guys. THANK YOU to all of our friends and family who take this seriously, watch and educate your own children, help me watch ours, and make crazy accommodations all so Z and S can live as normally as possible. YOU ARE AMAZING!  

(Our journey is not over.  This is Z Christmas 2011. We left gift opening early when he and S started to react to something. Thankfully this reaction and other recent reactions have all been mild and resolved with just Benadryl. That's a big sign to us that their allergies are lessening. Theories for this one: dog or peanuts.)

 In truth, though, not everyone wants to make accommodations for us.  One person told me that PB was so important in their children's lives that they would be seriously upset if their school banned it.  I graciously changed the subject before my emotions got the best of me.  When my poor unsuspecting husband came home from work he became my sounding board for my pent-up snarky attitude,  “All right, then!  Because there are people like THAT out there, we will home school our boys.  It’s financially next to impossible, and I looked forward to working one day.  But, SURE, I will teach EVERY subject to just my OWN children in my DINING ROOM.  I will do that.  So THEIR kids can eat peanut butter at school.”  And I cried.  Hard.   

 I’m not proud of my attitude, and the Lord definitely dealt with me over it.  The lesson learned was that: 1. Not everyone will want to help us accommodate our children.  It's a painful truth, but there you go.  And 2.  If the Lord doesn’t heal them, homeschooling would indeed be the very best way to safely educate our little men.  Not everyone can home school, so I still think schools and parents need to make accommodations.  For us, though, with sacrifices, we CAN do it.  When it became clear last spring that one of our older boys also would benefit from coming home, my heart was already primed and ready for the task.   

 I’m thankful that the Lord continues to work with us as we figure out how to balance it all.  We still live with this reality every day, but God gives us daily peace that we're doing the best we can.  One day I hope I can write a post with the title: Z and S are HEALED!!!  For today, though, I'm thankful for the journey. 

Right now our guys are happy and healthy little men!

As I wrote this Z and S were under my elbows, talking to me about their day, and laughing as they played together.  What a gift!  (and a hindrance, so forgive my grammar and other issues, ha!)  I am so thankful for the miracle of all four of our children and for a kind and loving God who carries us through every step of this journey!  

Today's post was inspired by the following link to another mom's story of her scary day that began so simply:

http://www.allergymoms.com/classroom.pdf 

Love,

G