Saturday, May 30, 2015

Where do I start?

I am the mother of not one, not two, but three children living with life threatening nut allergies.  Not just tree nuts, or peanuts, but also coconuts, and kiwi, and too many environmental allergies to list.

I grew up with severe allergies and asthma.  I spent so much of my childhood fighting to breathe and trying to have a normal life...if I only knew then, what I know now...normal is just a word...normal is what we learn to accept for our lives.

My asthma was severe and relentless...despite my parents taking me to specialists, and trying to desensitize me through injections twice per week...my asthma was so maddening, and overpowering, that I made a vow to never have children so that I would never risk passing such a scary, crippling illness on to a child.

Looking back, I wonder if my vow was simply to avoid disappointment later in life.  I often heard doctors quietly explaining to my parents that I could become infertile due to large and frequent doses of every medication available to attempt to stabilize my allergies and asthma.  Honestly, I am not sure which one weighed on me more...but that doesn't matter, because I have learned that God has the last word, despite my vow.

My first child was a perfect little girl.  Immediately after her birth, she was diagnosed with severe allergies to dairy products.  Thank God for soy formula.  Continuous digestion issues led to tests, but all pointed back to food allergies.  Thankfully asthma did not seem to be a chronic health issue for Tori, other than a small episode with difficulty breathing and an ER trip when she was two.

Through trial and error we learned to avoid dairy products. Although our first born introduced us to food allergies, nothing really prepared us for what we would experience with the birth of our second child.  

Many years later, and the answer to many prayers, Hunter was born.  He was a big boy and extremely determined and strong at birth.  Dairy allergies did not seem to be present, however he developed eczema early in his infancy.  Our doctors warned me eczema could be a sign of allergies and also asthma. Hunter's eczema raged on as he approached his first birthday.  The conservative approach to avoiding steroids was thrown out the window when his entire body was engulfed with eczema.  We worked at eliminating food from his diet to determine what could be causing his eczema.

We were cautious introducing foods into Hunter's diet.  Soon after he began eating soft toast the addition of a slight amount of peanut butter for flavor was followed with hives around Hunter's mouth.  We made a note to ourselves not to give him peanut butter as this could be an issue.

The first and most unbelievable day we realized we were dealing with a serious allergy issue was after a bath one evening.  Hunter was approximately 18 months old.  My husband had eaten cashews, washed his hands, and lifted Hunter out of his bath tub and wrapped him in a towel.  Within minutes, Hunter was screeching that he was itchy. His armpits were bright red and he was furiously itching and crying for help.  I want you to imagine two hand prints under his armpits. Two red, hive covered hand prints that belonged to my husband. Dale had gently picked up our son and wrapped him in a towel.  Although Dale had washed his hands with soap and water, this was the result of Cashew oil left in the pores of his hands.  We were in shock.  This became our first "night watch" to make sure he was not having difficulty breathing.

I made an appointment and talked to the doctor about needing an epipen, knowing how serious this was obviously becoming. However, he deterred me from carrying the epipen due to Hunter's young age and the danger of overdosing even with a child's dose.  He felt the ER was a better solution for a life threatening situation.  I was not settled with this answer, but in those days I didn't realize it was up to me to advocate for my children. I trusted the doctor to know the best way to handle a life threatening reaction. There is no one else who can be a better advocate then a mother and a father.  I can not say this enough, "you know your child best, trust your God given instincts, even if those instincts conflict with your doctors wisdom and medical science." Thankfully, we did not experience another reaction until after we established with our next doctor who immediately agreed we were to always carry an epipen and inhaler due to the severity of Hunter's allergies and asthma.

A year more passed and we welcomed Faith Torina.  While still in labor in the hospital room, along with my family members, we decided the name Faith was a testimony to the prayers that went into her arrival, and Torina was in honor of her big sister Tori.

Life started out very simply and easy with Faith, sadly at two weeks eczema appeared on her face. We were now on high alert and decided it best to assume Faith had nut allergies like her brother. We were doing so well learning avoidance of nuts, Faith did not have any accidental exposures for quite awhile.

At six months, Faith developed croup.  Thankfully we had already established our family in a pediatric pulmonology office and the pulmonologist was able to reassure and help us through her first episode.  (We met the pulmonologist initially after Hunter's emergency admittance to the hospital for an acute asthma episode.)

One year for Faith brought pneumonia. Eighteen months, pneumonia....it became a pattern, despite our hope to control this horrible disease.  

Hunter started Kindergarden.  The first day of school, I approached the teacher with Hunter's epipen and inhaler, she said medicine needed to be locked up in the office.  I am sure I must have appeared to be a bit worried.  I explained that his concerns were life threatening and he needed them in the same room.  I was sent to the principal who explained "district policy".

I quickly realized that not only were we learning how to deal with life threatening food allergies, the rest of the world was much further behind in their understanding.  The teacher and principal were only doing what they were instructed and prepared to do for us.  

Hunter's doctor wrote a letter explaining the severity of the issue.  An issue so severe, that there would be no time to wait for a cabinet to be unlocked and medication administered.

The next obstacle was reaction time.  Who at school would administer the epinephrine?

Each year and each reaction provided new wisdom and insight in dealing with the allergic reactions. Thankfully our school leadership has been wonderful in helping to keep my children alive while in school.  Through our trials and errors and accidental exposures and reactions, together we have established a food allergy action plan in our school district and continue to work toward improving and implementing policies and procedures to keep all children with life threatening food allergies safe and alive while in school.

The journey continues, please join us as we document our fight against food allergies.

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