Letter from ME! A peanut allergy mom

Many of you in the South Florida community have heard the tragic news regarding 11-year-old Oakley Debbs. Oakley, from West Palm Beach, FL died over the holiday weekend from accidental ingestion of peanut residue in a coffee cake. Oakley had a life-threatening allergy to peanuts. Oakley’s reaction was so severe, neither Epi-pens or doctors could save his life.

I asked my friend Lori to share her experiences managing the criticality of having a child with a severe peanut allergy. The objective is to help educate parents and raise awareness for how difficult this situation is and what is at stake. Everyone needs to have a role to be properly informed.

From a mom of a child with a life-threatening peanut allergy; a mom who wants to keep her child safe just like you!

carson

As a mom, when you hear that another mom loses a child, your heart breaks for her. You find this to be an unimaginable devastation. However, when a child dies from the very condition your own child has, it becomes more personal. It no longer is “unimaginable”. In fact, you sadly have thought about the possibility that any day this might happen to your child, randomly, from accidental exposure to the allergen. Your child might die.

Our four-year-old son Carson was diagnosed with a life-threatening peanut allergy when he was ten months old. The blood test and skin test results are shocking to see. Our pediatric allergist, with Joe DiMaggio’s children’s hospital at the time, told my husband Scott and I that we needed to act as if our entire family is allergic to peanuts. At the time, our oldest child was three and we were pregnant with our third child. As our allergist told us, if one of our non-allergic children eats peanut butter or a peanut product and it gets on her skin or clothes, then it will be brought into our home.. the exposure to our son could mean a life-threatening or worse, a deadly reaction.

Please know, an allergic reaction for a child with a severe peanut allergy is not simply a rash or runny nose. This is the biggest misconception I come across. The reaction can lead to the child’s throat swelling shut, cardiac arrest, and death. Peanut allergy is the most common cause of food related death.

The second misconception I come across, even from people in health care fields, is when a child has an allergic reaction to peanuts, simply give him a shot with an epi-pen and he’ll eventually be fine. WRONG! It is true Epinephrine (Epi-pen and other brands) is the only available treatment for a severe peanut allergy reaction, However, IT IS NOT AN ANTIDOTE to the peanut! Many children still die if the reaction is too severe even with injections from Epi-pens!

Experts now believe this is due to the delay in administering the Epi-pen. In order for an Epi-pen to have the greatest chance of success it must be administered immediately after exposure to the allergen. Every second is crucial!

It is important to understand that for a child with a severe food allergy, anaphylaxis does not require ingestion of an allergen, but simple contact (such as might occur when a child shares scissors or a pencil sharpener and then rubs his eyes) is enough to trigger onset of a reaction. Classroom procedures and awareness from other parents for parties and playdates is imperative and all that stands between another child’s innocent action and Carson’s life.

I myself avoid reading food allergy sites and blogs too frequently. For me, to read about another child being rushed to the hospital or dying from the very allergen my son is allergic to simply puts my spirit in a very sorrowful place, and puts too much fear in my heart. Then I realize I begin to behave in a manner that is not allowing Carson to fully live, but instead I am trying to prevent him from dying. To those of you whom have met Carson, you know he is quite charismatic! He lives every moment to the fullest! I do not want to take that from him.

What I ask of you is compassion. I am not trying to inconvenience you by asking you to not bring peanut products around my children. I am not trying to annoy you by asking you to please have your child wash his hands and brush his teeth thoroughly after eating peanut products prior to coming to school. I truly am sorry to inconvenience you regarding thinking about what to pack for your child for lunch because he is in a class with Carson.

To those of you who are irritated by inconveniences to your child, and yes, sadly us parents of food allergy children deal with this much too often, I’d like to quote author Karen Alpert (I’m paraphrasing slightly) from her book, “I Want My Epidural Back”. (By the way, Karen Alpert is not a parent of a child with food allergies! Just a mom who has compassion!)

“So lemme get this straight. There’s a kid who’s deathly allergic to peanuts. Like it’s so bad that if this kid sat down at a table where someone was eating peanuts, he would die. As in dead. Gone. Forever. And the only way this kid can go to school… is if you don’t bring peanut products to school.

And lemme make sure I understand where you’re coming from. So you think it is YOUR kids right to bring PB&J to school, and if someone asks her not to that her freedom is being squashed.

Am I understanding this so far? I just want to make sure I have this straight. ..Okay.

SERIOUSLY?!!! You think your kid’s right to eat a PB&J is more important than a kid’s life? She can still have it, just after school!   ..and why should your love muffin have to stop bringing her favorite peanut treats to school because some other kid has allergies?

I’ll tell you why. It’s called compassion. It’s called putting yourself in another mother’s shoes. It’s called teaching your kid that maybe, just maybe, her desire to take peanut M&M’s to school isn’t quite as important as a boys life. “

Ms. Alpert goes on to sign that chapter of her book, “Sincerely, A mom who cares about ALL kids, not just my own”

Sorry if you think that book quote is crass. My friend Heather, who knows Carson well, shared this book and particularly this chapter with me. I must admit I found pleasure in reading it! I suppose that’s because it’s what I think but am typically too polite to say!

The point is please have empathy and think about how difficult it is for our family every single day figuring out where Carson can and cannot go, and what he can and cannot eat. Try to understand how awful it is to send Carson off every day knowing he might not come home if he accidentally touches the wrong table. Please remember what happened to Oakley.

 

Please follow the Red Sneaker Foundation set up in Oakley’s memory to raise awareness of life threatening nut allergies.

My husband Scott and I would like to thank the countless number of friends, teachers and family members who have gone above and beyond to help keep Carson safe. Our sincerest gratitude cannot be measured.

Lori Smiley

Facts to know:

-A highly reactive child does not need to ingest the peanut allergen, simply rubbing his eye or nose after contact can be enough to trigger anaphylaxis, cardiac arrest or death.

-Peanuts and tree nuts are NOT the same. A peanut is actually part of the legume family. (Our son’s allergy is to peanuts, not tree nuts such as almonds, walnuts, hazelnuts. Carson can eat tree nuts with no issues. We do need to be mindful of cross-contamination, however.)

-The quantity of peanut product ingested does not equal the severity of a child’s reaction. For a child with a severe peanut allergy, it only takes ONE peanut protein to start a possibly deadly chain reaction in the body.

-About 20% of children with food allergies will have a reaction while at school.

-The number of children with food allergies is increasing, the cause for this is unknown.

– About 1 of 4 students who have a severe, life threatening reaction at school have no previous known food allergy!

-More than 3 million people in the United States are allergic to tree nuts or peanuts or both. (AAAAI)

-Less than 21% of patients with peanut allergy will outgrow it, unlike many other food allergies which are often “outgrown”. (AAAAI).

(Example: Carson also has an allergy to eggs, however at his most recent allergy skin testing it appears he may be outgrowing this allergy- which is common with egg allergies. He may be able to eat baked goods containing eggs this Christmas for the first time! -peanut free, of course!)

– Peanut Allergy is the most common cause of food related death (AAFA).

-There are safer alternatives to peanut butter that are quite similar in taste and texture. Almond butter is an excellent choice. For children with tree nut allergies Sunbutter and wow butter are good options. All are healthier options even for a non-allergic person. Now similar does not mean exactly like, so you’ll need to ease your child into a peanut butter alternative behind the scenes so they won’t taste the difference. You can do this by mixing it at first.

 

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