The Countdown begins - 24 days until we begin Oral Immunotherapy (OIT) for Tree Nuts

Excitement and anxiety are running high in our household.  After battling life threatening food allergies for over 14 years, we are fighting back by beginning Oral Immunotherapy which will begin on June 23rd.

Wikipedia definition of a Tree nut allergy:

a hypersensitivity to dietary substances from tree nuts causing an overreaction of the immune system, may lead to severe physical symptoms.^[1] Tree nuts include almonds, Brazil nuts, cashews,chestnuts, filberts/hazelnuts, macadamia nuts, pecans, pistachios, pine nuts,^[2] and walnuts.^{[note 1]}

Tree nut allergy is distinct from peanut allergy, as peanuts are legumes, whereas a tree nut is a hard-shelled fruit.

People with tree nut allergy are seldom allergic to just one type of nut, and are therefore usually advised to avoid all tree nuts, even though an individual may not be allergic to all varieties of tree nuts. Someone allergic to walnuts or pecans may not have an allergy to cashews or pistachios, even though close biological relatives often share related allergenic proteins. The severity of the allergy varies from person to person, and exposure can increase sensitization. For those with a milder form of the allergy, a reaction which makes the throat feel like cotton may occur . The raw nut protein usually causes a more severe reaction than the oil, and extra roasting or processing can reduce the allergic reaction. Those diagnosed with anaphylaxis will have a more immediate mast cell reaction and be required to avoid all exposure to any allergen-containing products or byproducts, regardless of processing, as they are prone to even greater sensitivity. An allergy test or food challenge may be performed at an allergy clinic to determine the exact allergens. New immunotherapy treatments are being developed for tree nut allergy.

This allergy tends to be lifelong; recent studies have shown that only about 9% of children outgrow their tree nut allergy.^[2]

Wikipedia definition of OIT: Oral immunotherapy (OIT) is a method of treatment for reducing negative or adverse reaction to allergens by oral administration of limited amounts of the allergen. OIT is currently under investigation as a treatment for a variety of common food allergies including peanuts, milk, and eggs. Studies involving OIT have shown desensitization towards the allergen.^[1] However, there are still questions about longevity of tolerance after the study has ended.^[2][3]

Course of treatment begins in a hospital or clinic, but can eventually be done at home. Many studies at first worked to reduce reaction due to accidental allergen exposure, but more studies are moving to get rid of adverse reaction completely. Though most patients experience mild symptoms on the first day, severe reaction is rare, occurring in <2% of subjects in each study.^[1] However, almost every study has excluded patients with severe allergen-induced anaphylaxis.^[4]

Our journey through OIT will begin on June 23rd under the direction of Dr. Chad Mayer.  Dr. Mayer has successfully worked with many children and adults to desensitize their food allergy and thereby change the quality of life.  We anticipate a future without constant worry and eating restrictions.  We are concerned and anxious as we move toward the beginning of OIT as it means ingesting the very allergen that has triggered severe reactions and ended in the emergency room.

Follow us on our journey through OIT.  It promises to be exciting and rewarding!

For more information about Dr. Chad Mayer and his approach to food allergies and OIT please visit his website at http://www.oitcenter.com/

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.

Choosing to live after a life threatening allergic reaction

We have been living with life threatening nut allergies for over 14 years. In that time, our nut allergic children have had numerous life threatening reactions. Also known as anaphylaxis.

Our children are severely allergic to tree nuts. One tiny dust sized particle could cause a reaction with the potential to be fatal.

From Wikipedia:

Anaphylaxis is a serious allergic reaction that is rapid in onset and may cause death. It typically causes a number of symptoms including an itchy rash, throat swelling, and low blood pressure. Common causes include insect bites/stings, foods, and medications.

My children have experienced the range of reactions.

• Swelling and hives from head to toe.
• Coughing, gagging and breathing difficulty. 
• Itching, hives, agitation.
• The feeling of impending doom. 
• Vomiting, diarrhea, stomach ache. 

We have experienced the complete range of "what to watch for in an allergic reaction".

• Difficulty breathing Swelling, particularly of the face, throat, lips, and tongue in food allergies
• Light-headedness and dizziness due to a rapid drop in blood pressure 
• Unconsciousness
• Hives – a blotchy rash that comes up very quickly, usually over the whole body
• Tightness of the throat and sometimes a hoarse voice
• Nausea and/or vomiting and diarrhea 
• Abdominal pain 

Last summer our son had a reaction to a cross contaminated muffin while away on vacation. His sisters both ate the muffin, however within minutes he was coughing and experiencing breathing difficulty. He quickly self administered his Auvi-Q epinephrine device and got out of the sun to try and  relax and keep his body temperature down.  We observed him to make sure the reaction subsided.

By midnight (12 hours later) the reaction came back with vengeance. His breathing was restricted and shallow, he was very sleepy. I observed his behavior to be highly unusual.  He told me he had tried to use his inhaler but it had not worked.  He then quickly self-administered the Auvi-Q and we called 911.

This was one of the scariest times in our lives.

On the ambulance I watched as he breathed and the EMT noted his labored but shallow breathing. Trying to stay calm for Hunter and to not appear absolutely crazy to the emergency medical workers. In my head I was screaming:

• Are they be trained and equipped in the seriousness of a life threatening reaction? 
• Did they truly understand how serious this was? 
• Do they know they are working on my only son?  The son I prayed for and begged for God to send me for over 10 years?

At the hospital, additional medication was given to counteract the anaphylaxis.  My son kept asking me if  he was going to die.  If he was going to be ok?  We prayed together, I prayed silently, and I watched and waited.  Eventually the doctors and nurses convinced my son to try to sleep, and he made me promise I would not sleep but watch over him to make sure he was breathing.

It was bad enough that I keeping my own fear inside and in check, Hunter was outwardly grieving and scared.

After being monitored and stabilized for several hours, we were released.   Released.... but what if?

• What if the reaction started back up?
• What if I couldn't stop it this time?
• What if he eats something again?
• What if I can't save him?

How could this be my life?  We aren't supposed to have to worry about our kids every second of the day. We aren't supposed to worry about a trace amount of nut contamination that could kill them.

God, what am I suppose to do?

The days ahead were filled with nothing short of Post Traumatic Stress Disorder.

I was in shock, and my son was afraid to eat, afraid to leave the room for fear of breathing in a particle of nut somewhere.

He was afraid to go to the fishing pier that he loved because someone may be eating nuts -- which fisherman do to pass the time away.

He was afraid -- to get too warm in the sun, because it could cause his allergic reaction to rear its' ugly head.

He couldn't breathe, his asthma after many years of lying dormant in his body, was severe and very active again, Hunter could not eat, and we were both mentally, physically and emotionally exhausted.

We returned home five days later.

Returned home to start middle school.

My son was hardly able to focus to complete homework, I was hardly able to focus in make sure he was doing his homework.

Keeping him in school was a struggle. We were literally treading water, except our heads were barely above the water.  It felt more like slowly sinking.

As a result of his severe reaction on vacation, Hunter's entire immune system was out of sync.  He now was experiencing chronic hives and chronic asthma.

His medication was changed.

He used the Auvi-Q again and we spent another evening in the emergency room.

Schoolwork was the last thing on his mind, and I struggled to keep up with what he was doing and still wondered if he should not even be attempting school at that time.

What did he eat?  Well, that is easy. Virtually NOTHING.

He was afraid to eat anything.

• toast for breakfast
• a sub for lunch, with the same exact bread, meat and cheese every single day
• plain pasta for dinner
• hamburger
• salmon

This list sums up the food he would eat.

I found myself checking EVERY label again and then checking online on the allergy groups to check myself.

Nothing was easy.

His health had deteriorated, he had lost weight.

It has been six months since the reaction on vacation.

My son has slowly reintroduced foods into his diet -- which is good and bad.  Good because he needs to eat more, bad because it makes me nervous.

His reaction was so sudden, and yet his sisters did not react.  How little was the particle or amount of oil in his muffin that one bite could change his life in such a dramatic way.

The only way we truly survived this reaction and the aftermath was to pray and trust God.

Trust God would see us through and believe that my son was born to serve a purpose on this earth.

The best advice I can give to you if you are in a similar circumstance:

• Turn to God with every fear.
• Go easy on yourself.
• Go easy on your child.

It takes time to recover from a dramatic life event such as an allergic reaction.

Choose faith. Choose to live.  Choose to be thankful for each day you are given.

Time to face the giant!

Our family has made an important decision.  We have walked on egg shells with nut allergies for the past 14 years.  Despite our best efforts to keep our children safe from accidental exposure to nuts, they have had serious reactions more times than we are comfortable with.

June 23rd will be the beginning of the head on battle - each of our children will begin Oral
Immunotherapy with Dr. Chad Mayer in West Bloomfield.

Although all will not agree that OIT is our best option, not one has walked a day in our shoes.

Our first encounter with nut allergies was with our newborn son in 2001.  As we learned through his encounters the severity of this horrible monster called food allergies, our daughter born in 2004 was the next survivor of an accidental exposure to a pretty cookie also known as a "cashew pinwheel" during my son's school event.  And finally, our college aged daughter and older sister had her first life threatening reaction while in college.  Strangely, she had eaten nuts her entire life and at 19 years old was suddenly very allergic.

Urgent care/ER Visits, school emergencies, vacations emergencies, three ambulance rides, a dozen epinephrine injections and numerous close calls have lead to our decision to fight back.

This blog will document our journey of living with life threatening nut allergies, and the journey of facing the giant head on.  The gloves are off and we are ready!

#facingtheNUTgiant
#facingNUTallergiesHeadOn
#OITisForToday
#FightingForFoodFreedom