The Food Allergy Epidemic: Raising A Food Allergic Child (Part II)
Walter and I
Walter, known for his finicky appetite, has not always been this way.
Walter was introduced to the world of solid food at about 7 months. He wanted everything his chubby little hands could hold. There was nothing finicky about Walter's appetite, then.
One morning while getting ready for our daily stroll, Walter motioned that he wanted my bagel, which was smeared with peanut butter and covered with sliced bananas.
According to Walter's pediatrician, children who were predisposed to food allergies should not have peanut butter until after their first year of life.
Grandma and Walter
As I looked at Walter's big eyes, his little arm outstretched, hand opened in anticipation of my bagel, I processed the situation this way: I don't have food allergies, Walter's father doesn't have food allergies, only a cat allergy. No one on either side of our families has had food allergies. Food allergies were not a part of my life, so they couldn't be a part of Walter's life.
After I licked most of the peanut butter from my bagel, I handed Walter his prize. A tiny voice in the back of my mind was saying no. I learned to listen to that little voice after that; intuition is a mom's best friend.
No sooner had Walter finished his piece of bagel then he reached out for another. That is when I noticed the angry red blotches covering his face and body. Alarmed and panicked, I instinctively rushed to my neighbor, a nurse. Her condo was just six feet away from mine and she was home. She administered Benadryl, along with a lecture about food allergies and anaphylaxis. Thank God I didn't have to worry about anaphylaxis; hives were scary enough, I thought.
My sister Alison, Aly, Walter and I
My sister Alison and I, now separated by over 500 miles, had done everything together before her family moved to Ohio. Our babies only 7 weeks apart made life even more fun to be together.
Before the move to Ohio, one day Alison's daughters, Aly and her older sister Katie, were snacking on rice cakes during their weekly visit to our home, and they offered one to Walter. Well aware of Walter's food allergies, Alison showed me the rice cake ingredient list on the package. Almond flavored rice cakes passed my naive inspection---after all, they weren't peanuts. Walter was given two rice cakes, and ate his double fisted treat enthusiastically.
Eye-rubbing, whining and overall grumpiness descended on Walter. "I guess Walter needs an early nap." I announced. Satisfied with our pleasant visit, we said our goodbyes.
I put Walter down for his snooze. Just as I was about to leave, I realized something was wrong. Walter's crying changed to a strange, hacking cough.
It didn't sound life threatening but I wanted some reassurance that Walter was okay, so I headed for the pediatrician's office. Our pediatrician was one of a vanishing breed. She had an open door policy for us new moms whom she knew needed consoling from time to time, as I did now. She loved her patients and always made time for them.
Thirty seconds into our car journey, I noticed an unusual silence; the coughing had stopped. Glancing in the rearview mirror, I was chilled to see Walter's eyes red puffy and swollen to the point of being completely closed. Walter's chest was heaving up and down in a struggle to breath. His skin was white and his swollen lips blue.
The immensity of the situation gut-smacked me: anaphylactic shock.
Walter was in anaphylactic shock, his throat was swelling shut. Very soon, he would stop breathing. My mind was racing; my foot pressed hard on the gas petal as I blasted through a red light.
How long does he have to live? Minutes or just seconds?
Even though this had clearly become an emergency room visit, the hospital was too far away. If I had realized back at my home that Walter was in anaphylactic shock I would still not have been able to get him to the hospital in time, not even if I called 911. The hospital was 30 minutes away, too far and too long for someone to survive anaphylaxis of this magnitude. (At that time not all ambulances were required to carry epinephrine; none of the ambulances in New Haven, Connecticut , did. ) Walter's only hope was the pediatrician.
Screeching to a halt at the pediatrician's front door, I grabbed Walter ran sobbing into the office screaming, "Save my baby, he's in anaphylactic shock!" Walter was immediately pulled from arms and jabbed in his thigh with a syringe of epinephrine (adrenaline).
That saved his life.
Not all pediatrician's carry epinephrine. Walter had had a visit with this same pediatrician just a few days before for a checkup. I told the doctor about Walter's peanut allergy and how, luckily, Walter only gets hives. She knew better. She handed me a prescription for an epi-pen (auto-injector), told me to fill it, which I, foolishly, did not do.
Now that she had a patient with peanut allergies, the doctor immediately ordered epinephrine for her office. The epinephrine Walter's pediatrician used to save his life had arrived the same morning of Walter's attack.
It seems some parents who have never experienced seeing their child going into a full blown anaphylactic shock and just hives, go through a denial. I have met many and recognize them, because I was one of them. When a mother tells me her child is allergic to peanuts but they don't have an epi-pen because their child only gets the hives, I shudder to think what can happen. I tell them my story and explain that peanut allergy is a strong allergy, that it is to be respected. Anaphylactic shock most likely will happen eventually if the child is exposed, it is unpredictable and very important to be prepared with an epi-pen.
If you know any such parents please pass on my story and help them.
Although peanuts were not on the ingredient list, the rice cakes Walter consumed were made in a factory that also made foods that contained peanuts. Deadly contamination can occur at extremely slight levels.
There is a lot to worry about with peanut allergies. If Walter were playing with a child who had eaten a peanut butter sandwich then wiped his mouth with his hand, it could have been a touch of death.
I learned about cross-contamination from The Food Allergy Network (FAN)
I don't always agree with everything FAN has to say about their food allergy theories and their nutrition advice or their stance on vaccinations. But they have saved many lives by educating companies, institutions and parents.
FAN covers everything from educating your child and your friends to potential cures, trials and studies.
FAN even has a hotline you can call to ask questions, which I took advantage of.
I learned a lot about peanut allergy and how to keep Walter safe. It was a daunting job. There was a lot more about Walter's food allergies I had yet to learn.
Raw Egg Whites
I found out Walter was allergic to egg whites while having breakfast with some friends at a diner. Walter was happily dining on his favorite breakfast at the time, French toast. When ordering Walter's food, I was careful to tell the waitress about his food allergies and I had a brief conversation about cross contamination. You can imagine my surprise when Walter started to show signs of anaphylactic shock. I recognized the signs immediately; within seconds I administered the epi-pen and we were off to the emergency room.
Sometimes the epi-pen only buys some time, so it's important that you stay in the emergency room for a couple of hours, even if it means sitting in the waiting room after you have seen the doctor.
After the French toast episode it was off to the allergist. The allergist skin prick test showed Walter was allergic to eggs. Strange, how could this happen, he has been eating eggs all along. I had to stop giving Walter eggs all together. That meant no baked goods. I did this for several years until further testing showed Walter was allergic to raw egg whites and could have cooked eggs without triggering symptoms.
I was assured by Walter's allergist, who came highly recommended as the top in his field, that Walter would not be allergic to any other foods. Two food allergies of this magnitude was unusual enough, so a third would be highly unlikely. Funny, I thought, he said the same thing before we found out about Walter's egg allergy.
I started to become wary of giving Walter new foods; eating became a game of Russian roulette.
As it turned out, Walter is allergic to mustard, too. The first time he had mustard he was about fourteen months old. I didn't realize at the time what allergen he reacting to. Walter had eaten hot dogs before, but this time it brought on anaphylactic shock. I reacted quickly. Knowing the drill well, I injected him with epinephrine and took him to the emergency room. I handled it calmly and confidently although confused as to what had triggered this attack.
While Walter was being examined in the emergency room by the doctor, the nurse entered the room with a phone. It was their policy to call their patients' allergist when someone was admitted for food allergy. No sooner did I say hello when the allergist started yelling for me to calm down. I was extremely calm and asked him what he was talking about. He frantically told me that I had overreacted, how I was wrong to give Walter the epinephrine and go to the emergency room, that I had acted inappropriately and how Walter did not go into anaphylactic shock.
I have to say this doctor got my "Italian up," in other words, made me see red. "First of all, you are hysterical, not me, and you are being extremely unprofessional. How dare you talk to me like that, and how dare you make claims you cannot back up. How do you know Walter did not go into anaphylactic shock? You weren't there." The doctor said that hot dogs were not a trigger food, therefore he could not have gone into anaphylactic shock.
I got a new allergist, straight away.
That's when I realized it was the mustard seed that triggered the attack. Walter for the fourth time in four months had gone into anaphylactic shock. We went through the usual routine. This time I knew for sure it was mustard seed. I later went to the grocery store and found the brand of hot dogs that sent Walter to the hospital just a month ago and read mustard seed on the ingredient list.
This is when I realized mustard was used often used to spice up meats.
Raising a Food Allergic Child
The overwhelming and daunting job of being a new mother was magnified 100 times when I realized the seriousness of Walter's food allergies.
What should I do in my own house to make it safer for Walter?
How do I make it safe for Walter when visiting family and friends?
What about birthday parties?
What if Walter gets sick and is admitted into the hospital, the staff may give him someone else's food by mistake.
What about a scorned lover? How easy it would be for her to lace his food with peanut dust.
A passionate kiss could turn into a poisonous kiss, from an innocent girl's lips tainted from a Reese's peanut butter cup she had eaten a hours before.
My thoughts raced to Walter as an old man in a nursing home. Oh my, they would definitely get his diet wrong.
In spite of my fears, time passed and somehow I kept Walter safe.
The most stressful time was when Walter was a toddler, his hands always in his mouth, unable to understand his allergy.
Snacks left out in colorful, enticing bowls at birthday parties , convenient for little hands to grab, seemed like lethal weapons to me. I would ask the moms what was in the bowls, did they have the original package the food came in? Often they did, and as time went by, moms caught on and saved the packages for my inspection. Educating everyone about Walter's food allergies was a difficult task. Some moms were great, others a little resentful.
But for the most part, moms were cooperative. I guess you can say I was the official birthday cake baker. I became a good baker and an even better cake decorator. I used colors galore and made the children's favorite characters: Barney, Winnie the Pooh and the Power Rangers. It was a win-win situation, the moms got a free and beautifully decorated cake and Walter got to eat a piece just like everyone else.
Relatives (not my side) were the most difficult to educate. During get togethers and parties it was not unusual for there to be some offending food that could kill Walter. To me, it was like having a loaded gun on the table. I would calmly bring the offending food, usually a bowl of peanuts, if you can believe it, to the kitchen and ask that it be put away. I was tough when it concerned Walter because one mistake, one lapse of judgement and he would be in trouble. I was always on duty and ready for battle.
Christmas Eve celebration at my house was another such time. Everyone was gathered around a delicious desert display when I noticed a plate of cookies that were not first approved by me. I quickly looked for Walter and there was my sister-in-law about to hand a cookie to Walter. I quickly intercepted the exchange. "I don't allow Walter to eat cookies that are not baked by me." I said. "What kind of cookie is this?" My sister-in-law just looked at me wide eyed, with her hand over her mouth. "Peanut." I grabbed the cookie from her hand and the plate from the table and threw them in the garbage, plate and all.
Left to right: Connor holding Pepper (our dog), Walter, Chandler
School For Walter
My second son Chandler was born just twenty one days after Walter's fourth birthday.
Day care was important to me since I felt Walter could use a break from the house and his new little brother. After much research and a dozen day care visits I finally found the perfect day care for Walter. The Neighborhood Music School in New Haven, CT. Instead of handing over a waiver to free them of any responsibility regarding Walter's food allergies, they asked questions and made concessions and promised to keep Walter safe. They had an excellent safety plan even by my standards, that say a lot.
School on the other hand; what to do?
This is something I had been thinking about for a long time. I had decided to home-school Walter. I had read many books and had already been to several home-school meetings. I knew this would be the perfect plan for Walter.
My husband who was not satisfied with my research wanted Walter to go to school. This was sixteen years ago when food allergies were not as prominent as they are now and schools were a war zone for someone with peanut allergies like Walter's.
There was no way I was going to let Walter go to school. I did agree, however, to visit the principal of the local elementary school to see what safety plan, if any, they could offer us.
As it turned out, my suspicions were correct: there was no plan. The only thing the principal could offer was to isolate Walter from the other peanut eaters in the cafeteria.
There was one nurse for the whole school and she was the only one insured to give Walter the epi-pen. "You mean if Walter goes into anaphylactic shock in math class, the teacher would have to go and find the one nurse in the school to come and administer the epi-pen to save Walter life?" I asked. "Yes," said the principal.
This was a deal breaker. No way would I allow Walter to go to public school---it was just too dangerous.
Home-schooling Walter led to homeschooling Chandler and then Connor. It was the best decision I ever made. I have not had one minute of regret; it has brought us so much joy and has given me so many precious memories. My children have strong bonds from being home-schooled and remain great friends. But that is a story for another day.
Walter The Man
Walter now twenty one had never experienced anaphylactic shock again until he turned 20 years old.
I was relieved to find out that Walter, even though he had no recollection of what anaphylaxis was like, recognized the signs and reacted immediately. He didn't hesitate, but injected himself with the epi-pen and had a friend take him the emergency room.
He called me on the way to the emergency and calmly said, "Mom, I ate chinese food that must have had peanut oil in it. I gave myself the epi-pen and am on my way to the hospital."
I am happy to say he is fine and learned a valuable lesson that day. I couldn't help but wondering at times if Walter believed he was still allergic. After all, it had been approximately 19 years since his last episode.
All those years of educating Walter paid off.
Walter is now 21 and married to a lovely woman who is very dear to us.
In part three of this post we tie together posts 1 and 2 and introduce the startling facts about peanut oils in vaccinations.
Walter and his new wife Teake
I also recommend you read: Food Allergies Testing For Anger Management In Children
Other articles I have written:
Here are some of my other hubs I hope you enjoy: