Red Sneakers for Oakley
I received a little note via my Twitter messages, asking to help raise awareness by telling our story of food allergies, and what I wish more people realized regarding food allergies. The request came from an organization commonly known on the internet by their hashtag, #redsneakersforoakley Read more about them here.
Red Sneakers for Oakley was created to spread advocacy and education, in the wake of an 11-year-old’s untimely death due to a fatal reaction to nuts. His name is Oakley, and in honor of him and the request from this organization started by his parents, I share our story. Every time I wear red shoes I will think of Oakley. While I don’t have a pair of red sneakers, I do have some red Birkenstocks, and will work on getting some sneakers. For today, I wear these…
Our Peanut & Shellfish Allergy Story
Our story goes back to 2007 when I was pregnant with my first child. I ate all sorts of peanut butter containing things while I was pregnant. I share this because one thing I want people to know, is that I DID eat peanuts and peanut butter. So many people when they find out he has a life-threatening peanut allergy, they say, “well you know doctors say you SHOULD eat it during pregnancy”. Thank you well-meaning family member or friend, I did. I did eat peanuts and peanut butter. Do I think it caused his allergy? No, but I also don’t think it helped him avoid an allergy either.
My cute baby boy was born at the end of 2007, and he was just perfect in every way! He grew, and he grew, and he grew. When he was about 9 months old, my husband and I were eating a fresh batch of Scotcheroo’s that I had made (rice krispie treats with melted butterscotch chips, chocolate chips and peanut butter). My husband thought he’d break off the tiniest bit and let my son try it. He tried it early on, like many studies suggest and like many a well-meaning person will say, “well didn’t you hear, introduce it early to avoid the allergy”. I’ve met many that were allergic since birth and it would cause an allergy if their mother ate it, and the protein passed through their breast milk. So as I digress… I’m not sure if that has anything to do with it either way, by way of introduction, early or not.
Our baby immediately got hives all around his mouth. As first time parents we had no idea that was a huge sign and we should be careful of peanut butter in the future. We called the triage nurse at our local E.R. and she blew it off like it was nothing and said that it was probably just a little reaction to the peanut butter. “Nothing to worry about,” she said. She gave no warning for future issues, or any other information or resources. So we forgot about it and moved on.
We took him to Arizona Diamondback baseball games, and held him while we ate peanuts and had peanuts all around him. We ate all sorts of peanut containing things all the time. We still have a picture from when he was about a year old and I put him in this tiny photo prop bathtub and dressed him in a yellow M&M onesie with matching beanie hat that my sister had gotten at the M&M store in NYC. I filled the tub with peanut M&M’s. We never had anything in the back of our minds telling us something was or could be very wrong in the future.
Fast forward to 2009 and he was a little more than 18 months old. He was sitting in his high chair and I had gotten some of those popular, frozen peanut butter and jelly sandwiches. I cut it up into little pieces and wanted him to try it. He wanted nothing to do with it. So as anyone with a baby knows, you can get a dab on your finger and put it to their mouth. Typically that’s enough for a baby to get a little taste and realize they do want more. Not for our son. That was enough for me to cause him an anaphylactic life-threatening reaction within SECONDS.
He immediately started screaming bloody murder. I freaked out. I was a first time mom. What was happening?! I ran to our kitchen sink and got a wet paper towel and came back to wipe it from him. By that time, my poor little guy had ingested it and wiped it all over his face and in his eyes, in his effort to remove it. His entire face was swollen. His eyes completely swollen shut. He didn’t even look like my child. I didn’t know if he was breathing or anything. He was so young that I couldn’t talk to him and get a verbal response.
Luckily we lived less than 2 miles from the nearest hospital. I put him in his car seat as his little body was going slightly limp. I jumped in the car with no shoes or purse and sped down the street. I parked by the E.R., and ran in with my baby in my arms. I didn’t even check-in at the front desk. I went straight back to the triage area and was crying, “I gave him a peanut butter and jelly sandwich”. The nurse jumped up and all hands on deck. They gave him steroids, epinephrine, and antihistamine. He slowly recovered physically. His face didn’t go down from the swelling for nearly a week. They were able to save him though.
Had I known then, what I know now. I would have had him tested for food allergy after the hive reaction. Typically the first reaction that one experiences is mild, and can lead to life-threatening reactions. I wish that triage nurse we called after the Scotcheroo incident, had told us that we may want to follow-up with an allergist. I wish I had known to call 9-1-1. Everything worked out, and who knows in hindsight, maybe I got him there quicker than an ambulance would have gotten to me. We did live in what’s known in Arizona as a “county island” and didn’t receive police, fire or ambulance like the rest of our neighbors because we weren’t zoned for the city or related taxes. Had I known then, what I know now, I would have been seeing an allergist and probably done an “in-office food challenge”. If I knew then… isn’t that what we all say?
From that point on, peanuts became public enemy #1. I have since stopped eating any peanuts or peanut butter. My husband does eat it sometimes when at work or when camping and hiking with his friends. I just can’t. Mentally and emotionally. I can’t eat something that I know would kill my child. I don’t judge my husband or anyone that eats their child’s allergen. I think we all do what is in our comfort zone, and that’s 100% okay. We each have to do what works for us, and respect one another’s choices.
We do not keep anything peanut or peanut butter in our house. We also don’t keep any “may contains”, with the exception of a few things that I will sometimes purchase for myself when I am doing Atkins (hey this is real life folks ha!). My Atkins bars etc. have may contains and so I have a small narrow cabinet in our kitchen that I keep all my “diet” food in. All my children know that this one cabinet is the “not safe” cabinet. I tend to diet about every other year, postpartum. When I’m not dieting and living life normal, I do sometimes get treats that are may contains, like my favorite Mexican Hot Chocolate, that has lupine which can cause a reaction in about 20% of those with peanut allergy.
For several years I was able to keep him safe. We were very strict about his environment. Family, friends, church, and elsewhere were all notified of his allergy and asked to keep everything peanut and tree nut free. Most were very supportive and understood. They had empathy. Others were judgmental, and even rude in some instances. We were oftentimes mocked and belittled for our requests. They would say, “well I know someone with xyz allergy and they can eat this, do that, and be around whatever”. It became a very hurtful isolated journey.
Our effort to make things for our toddler peanut and tree nut free weren’t to eliminate the risk, it was to minimize it. Toddlers stick each others fingers in one anothers mouths, they pick their noses and wipe it places. Let’s face it, toddlers are kind of gross and don’t know any better. Also, no matter how many times I tell my child not to share, not to eat food from other people etc., a toddler is not and SHOULD NOT have to be their own advocate. As my son has grown, we alter expectations and guidelines as age appropriate, and to this day are his first line of defense as parent advocates.
It was at this point that I started looking for support. I didn’t find what I was looking for, and founded a non-profit. It was a great successful group that had many accomplishments including passing legislation to put epinephrine injectors in schools. Unfortunately, because of what became known as the Great Recession of 2008, many families and businesses were still trying to stay afloat, and survive. It’ wasn’t a prime time for a non-profit. After about a 5 year run, we closed our doors.
When my son was preschool age we lived in a very rural area, and there weren’t many options. I met a woman at my church that homeschooled all her children, and was even part of a homeschool group. I became very intrigued by this option. So I joined her homeschool group and began homeschooling my son for preschool.
A couple of years passed and it was Kindergarten time! I was beyond frightened. I wanted to make every effort to ensure he would be safe at the local public school. So I joined the PTSO (Parent Teacher Student Organization), as their Vice President, the year before my son was even in school! Yes, it’s a thing and you can do it. I thought, okay I will work so hard to get to know everyone. I will spread education and awareness. I slowly began to see, however, that I couldn’t trust them to keep him safe.
I gave an educational presentation to the teaching staff after school. I was met by strong opposition to simple educational facts. Keep in mind that this was not me asking them to be peanut free or anything of that nature. It was literally and simply facts. I had one teacher raise his hand and insist that there was a cure and that I should just go get my kid that cure. He “knew someone” who had been cured of their allergy (NOTE: THERE IS NO CURE).I spoke with others in the schooling staff at other times through this PTSO volunteering, and I told my husband that I came to the realization that I can’t “make” them really truly care for our son. The teachers really seemed overwhelmed by all the things teachers are to be concerned for in this day and age, and my kid with a peanut allergy was often times met with a shrug of the shoulders, blank stare, or a roll of the eyes.
So I went back to that same homeschool group and asked and learned all I could about homeschooling. My husband and I decided shortly after that we would be homeschoolers. It was and is the best decision we have ever made. While we originally homeschooled because of my sons peanut allergy, we are committed to homeschooling all 5 of our children now because of an array if reasons, but that’s for another post.
Most recently, we have had another revelation in our food allergy journey. We went with our homeschool group to the Phoenix Zoo. They had a sting ray exhibit, and my son asked if we could pay the extra nominal fee to allow him to enter and participate in feeding them and petting them. Sure! Just minutes after he had been playing with the sting ray’s and had his hands and forearms in the water, he began itching like crazy. My gut instinct told me something was wrong. I had asked prior to him going in, if there was anything with peanuts in the water or food. No, just shellfish. Okay, great because he has a peanut allergy. Nope, this led us to finding out that he has also now acquired a shellfish allergy. We will now be avoiding shellfish like the plague, and have public enemy #2.
Since his first reaction, its been a long hard road. A road filled with lack of empathy, lack of inclusion, lack of caring for his safety, lack of awareness, lack of education, lack of human decency, lack of many things.
However, and I do stress, however, it’s also been a journey filled with blessings, love, finding like-minded empathetic and even sympathetic people. We have seen the food allergy world grow and change. We have seen awareness, education, and inclusion evolve over the years, and it’s really quite amazing.
My Husband’s Gluten Intolerance
During this time, my husband has a story as well. He was diagnosed at Mayo Clinic with fibromyalgia, and related gluten intolerance. He has terrible pain all over his body from fibro. He describes it sometimes, like someone is running the flame from a lighter across his skin. His chest hurts so badly that just the light weight of his seatbelt when driving, causes extreme pain. When he goes strictly gluten-free, he is almost like a person with no health issues at all. However, if he eats even the littlest bit of gluten he begins having terrible pains and issues with his body. He will be the first one to say, however, that there is a big difference between his intolerance and our sons anaphylactic allergy. He will feel some pain and be uncomfortable from gluten, but peanuts can literally kill our child.
Food Allergy Mom, Turned Non-Profit Founder, Turned Blogger
It’s really hard to not become consumed by all the negative, because believe me, there is much to be negative about. That in part is why I started this blog, Food Allergy P.I. I wanted to show my son through my own actions, that we can be positive and happy about his food allergy. Food can be fun! That he can learn to investigate every ingredient and label. That he can take all the proper precautions to stay safe, and that maybe, just maybe, along the way we can encourage others to do the same.
What I Wish People Knew? The Facts of Food Allergy & Anaphylaxis
What do I wish people knew? A short list would include:
- Food allergies are REAL
- They can be DEADLY
- There is NO cure
- JUST A LITTLE BIT through cross-contamination is enough to cause a deadly reaction
- STRICT AVOIDANCE is the only way to prevent a reaction, and epinephrine is the only medicine to stop the life-threatening reaction known as anaphylaxis.
The following is a list that I wish everyone, literally every person that walks this earth, could read and know. The information below is from www.foodallergy.org, and you can download the PDF from their site, here.
What Is a Food Allergy?
- A food allergy is a medical condition in which exposure to a food triggers a harmful immune response. The immune response, called an allergic reaction, occurs because the immune system attacks proteins in the food that are normally harmless. The proteins that trigger the reaction are called allergens.
- The symptoms of an allergic reaction to food can range from mild (itchy mouth, a few hives) to severe (throat tightening, difficulty breathing).
- Anaphylaxis is a serious allergic reaction that is sudden in onset and can cause death.
To Which Foods Are People Allergic?
- More than 170 foods have been reported to cause allergic reactions.
- Eight major food allergens – milk, egg, peanut, tree nuts, wheat, soy, fish and crustacean shellfish – are responsible for most of the serious food allergy reactions in the United States.
- Allergy to sesame is an emerging concern.
How Many People Have Food Allergies?
- Researchers estimate that up to 15 million Americans have food allergies, including 5.9 million children under age 18. That’s 1 in 13 children, or roughly two in every classroom.
- About 30 percent of children with food allergies are allergic to more than one food.
Food Allergies Are on the Rise
- The Centers for Disease Control & Prevention reports that the prevalence of food allergy in children increased by 50 percent between 1997 and 2011.
- Between 1997 and 2008, the prevalence of peanut or tree nut allergy appears to have more than tripled in U.S. children.
Food Allergy Reactions Are Serious and Can Be Life-Threatening.
- Every three minutes, a food allergy reaction sends someone to the emergency room.
- Each year in the U.S., 200,000 people require emergency medical care for allergic reactions to food.
- Childhood hospitalizations for food allergy tripled between the late 1990s and the mid-2000s.
- About 40 percent of children with food allergies have experienced a severe allergic reaction such as anaphylaxis.
Serious Allergic Reactions Require Immediate Treatment
- Once a serious allergic reaction (anaphylaxis) starts, the drug epinephrine is the only effective treatment.
- Epinephrine (also called adrenaline) should be injected within minutes of the onset of symptoms. More than one dose may be needed.
- Easy-to-use, spring-loaded syringes of epinephrine, called epinephrine auto-injectors, are available by prescription.
- Not treating anaphylaxis promptly with epinephrine increases the risk of a fatal reaction.
Food Allergy Impacts Quality of Life
- Food allergy limits a major life activity and may qualify an individual for protection under the Americans with Disabilities Act of 1990 (ADA) and Section 504 of the Rehabilitation Act of 1973.
- Caring for children with food allergies costs U.S. families nearly $25 billion annually.
- About 1 in 3 children with food allergy reports being bullied as a result.
- Compared to children who do not have a medical condition, children with food allergy are twice as likely to be bullied.
Who Is at Greatest Risk?
- Compared to children who don’t have food allergy, children with food allergy are two to four times as likely to have other allergic conditions, such as asthma or eczema.
- Delaying introduction of allergenic foods does not provide protection against food allergy. In fact, feeding peanut foods early and often to babies with egg allergy or eczema dramatically reduces their risk of developing peanut allergy.
- While most food allergies arise in childhood, at least 15 percent of food allergies are first diagnosed in adulthood.
- Approximately 20-25 percent of epinephrine administrations in schools involve individuals whose allergy was unknown at the time of the reaction.
- Severe or fatal reactions can happen at any age, but teenagers and young adults with food allergies are at the highest risk of fatal food-induced anaphylaxis.
- Individuals with food allergies who also have asthma may be at increased risk for severe or fatal food allergy reactions.
- Most fatal food allergy reactions are triggered by food consumed outside the home.
- More than 15 percent of school-aged children with food allergies have had a reaction in school.
Can Food Allergies Be Outgrown?
- Although allergies to milk, egg, wheat and soy often resolve in childhood, children appear to be outgrowing some of these allergies more slowly than in previous decades, with many children still allergic beyond age 5.
- Allergies to peanuts, tree nuts, fish and shellfish are generally lifelong.
Is There a Cure?
- There is no cure for food allergy. Food allergies are managed by avoiding the problem food(s) and learning to recognize and treat reactions symptoms.
- Food allergy therapies are under study in clinical trials, but none has been proven yet for general use.