One wrong bite…

Sally - julia and me

Sally - a mother's love

As I searched for quotes about protecting children from harm, I found a shocking number of absolutely hate-filled comments directed toward nut allergic children and their parents. The quote that I found most fitting after reading news articles and interviews was this:

The ugliest thing that I have ever seen is a human being without compassion. ~h. milne p.

I once wrote a blog post about protecting our children called: Better a thousand times careful than once dead. As I was pondering titles I couldn’t help but think that one was also fitting for this!

While all children need protection from maniacs (‘nuts’ if you will), there are many children who need the same diligent protection from certain kinds of ‘nuts.’ I am only qualified to write this as a mom of a child who suffers from an anaphylactic allergy. I am writing specifically about anaphylactic allergies and how our family and loved ones have handled this issue. Parents of children with deadly allergies are called a whole lot of ugly things! The general consensus of the masses is that we are bent on ruining everyone’s childhood, banning all the nuts, and demanding that the entire world revolve around our nut allergic child. We really ought to just remove them from society and ‘raise them in a bubble.’ How dare we insist on education and caution?

After my search for quotes, I also realized that I wanted to protect my daughter from the ugliness surrounding the nut allergy controversy. I know very well how I would feel if I knew that people found my very existence annoying and my desire for safety inconvenient and demanding. The ugliness was summed up in this quote, originating from a stand up comedy act, but used by others quite seriously:

Of course children who have nut allergies need to be protected. Of course. We have to segregate their food from nuts, have their medication available at all times and anybody who manufactures or serves food needs to be aware of deadly nut allergies, of course. But, maybe, maybe if touching a nut kills you, you’re supposed to die. ~ Louis CK

I am rather convinced that most nut allergic children and their families aren’t laughing at that. I certainly know the parents of children who died as a result of accidental ingestion wouldn’t find it at all funny. Anaphylaxis is basically a form of suffocation. Here’s what happens according to the Mayo Clinic’s online description: The flood of chemicals released by your immune system during anaphylaxis can cause you to go into shock; your blood pressure drops suddenly and your airways narrow, blocking normal breathing. Signs and symptoms of anaphylaxis include a rapid, weak pulse, a skin rash, and nausea and vomiting.

I fully understand that other allergies and intolerances can cause many illnesses, but this post is meant to address those allergies that potentially KILL within minutes. I think we make a mistake when we compare preferences, intolerances, and non-life threatening allergies to anaphylactic allergies. I suffer from two food ‘allergies/intolerances’ and two allergies to medications that cause me to become extremely ill. I am diligent in taking care not to consume those four items. However, there is a huge difference in what I will suffer if I ingest them and anaphylactic shock. I don’t believe for a second that it belittles other allergy sufferers to recognize the severity of an allergy that causes death and to put it in a different category than other allergies.

Our daughter, Julia, was just over a year old (still breastfeeding and eating some basic solids) when we discovered that she was dangerously allergic to nuts after a few tiny bites of a treat. After a severe rash developed upon her consuming a dessert containing peanut butter (peanut butter rice crispy treats), we were advised to avoid nuts and nut butters and to have her blood tested for allergies. We opted for a RAST test which determined that she was highly allergic to peanuts and tree nuts. Many families opt for skin testing. In Julia’s case, the severity was a factor and we were advised to avoid skin testing. As of 2015, we have been dealing with her allergy for about 15 years.

We soon learned that ingestion was not the only issue. Julia has had many reactions (pre-anaphylaxis) from contact and smell. We have learned some valuable lessons about ingredients in soaps and lip gloss (sweet almond oil, watch out!). We have seen her react from drinking after a person who consumed nuts (yours truly …oh boy, did that end drink sharing!). She has reacted to kisses from relatives and contact with library books to name a couple. Thankfully, using Benadryl for contact reactions is often sufficient. Still, severe rashes and gastrointestinal issues are unpleasant and scary for a child who knows what would’ve happened if that food had made it beyond her skin!

We knew that she would need to immediately visit the Emergency Room after using an epi-pen, so we absolutely determined that she would NOT ingest nuts. Ever. If we could help it, we were determined to micromanage her food in order to preserve her life. For the next decade, I became her primary food provider. At the time, she was the youngest of five children (we now have six), aged one to eight. With so many small children and all the care that goes into running a home with many littles, it was imperative that Julia’s safety was of utmost concern. From the day of her first reaction, we banned nuts and all nut products from our home. In the days of breastfeeding, baby wearing, snuggling, and group snacking, having a 100% nut free home was much easier than allowing nuts. It was enough to deal with eating out, potlucks, travel, day to day things…without having to worry about a reaction in our own home.

Our complete nut ban was in effect for over a decade. It wasn’t until Julia was well prepared and fully able to handle her own allergy that we allowed the other family members to eat contaminated items, with a strict protocol in place for consuming the items. If we hadn’t been able to trust that our family could be super vigilant, we wouldn’t ever have allowed nut consumption, even as Julia grew into an older child. However, with good habits and diligence we have set a protocol in place that has allowed us to consume nuts safely: disposable utensils, specific plates used for nuts, one blender for only nuts or nut butters and everything else NUT FREE. With the level of vigilance needed, we have only allowed our immediate family to consume nuts in our home and we still do not ever cook or bake with them. We do not allow company to bring nuts or nut items. For the first 8 or so years of Julia’s life, I rarely even allowed others to bring food into our home. Potlucks can be a nut allergic child’s worst nightmare. We simply make arrangements to bring food suitable for her because it is simply not safe to trust that food will be uncontaminated in most cases. Even well-meaning people often think things are safe and then remember later that they were making nut-cookies while they did the dinner or that the recipe *did* contain nuts. Often people think that if it doesn’t contain PEANUTS, it’s fine. They forget about every other nut! I learned to specify on invitations so guests would understand that peanuts weren’t the only offenders!

Many believe that banning nuts, nut butters, and contaminated items is an extreme over reaction. Few parents of nut allergic children feel this way. When it is my child’s life or death, your demands that your child enjoy his PB&J in the presence of nut allergic children seem absurd. If this precious little baby girl were YOUR little girl, let me tell you something: you would do anything in your power to protect her! I fully understand that it is impossible to keep all nuts away from my child at all times, but I do know that precautions can be taken to ensure her safety. Every nut allergic child deserves to be surrounded by loved ones who care enough to be cautious!

Hand shaking, holding babies, seemingly innocent kisses on the check or forehead, accepting treats, playing on public equipment, playing with other children, using library books – things that most children experience without danger – can be deadly or in the least uncomfortable for nut allergic children. Contact with nut contaminated people can cause hives, tightness in the chest and gastrointestinal disturbances (i.e. vomiting and other stomach sicknesses). Older children will notice the tightness in the chest and immediately realize they’ve been compromised. Younger ones might just seem fussy or have unidentified swellings, rashes or an upset stomach. Many an hour is often spent tracing back a rash or sickness to the contact with nuts. Hives often last for a few hours, but can also take a few days to clear up. Stress can also cause widespread hives and nut allergic children may continually react to nut-contaminated situations with hives and vomiting – contact and stress induced.

Allergy parents and families need to be well informed and diligent about their child’s specific needs. There are steps that can be taken to avoid cross contamination. In most cases, our nut allergic child prefers to bring her own food when food is prepared by many hands. In the case of well-known family and friends, she can usually eat safely!

Educate – Nut allergic children need to be educated gradually in a relaxed way. They will need to learn vigilance, but when they are young, the family will need to be vigilant for them. You must educate your family and especially your nut allergic child. How you educate the child will depend on the age of the child. Julia was so small that nut avoidance was simply part of our child training. We also found a great little book called No Nuts For Me!!

Diligently read labels – There is no way in the world that a nut allergic child can survive with a parent who doesn’t read labels. You must read the large print and the small print. You must also know the difference in various warnings on labels. There is no substitute, besides a garden, for reading ALL labels…it often seems like anything in a package is contaminated in one way or another. Whole and unprocessed foods are the best, but many natural items are contaminated by tree nuts when packaged!

Vigilantly observe food – Purchase safe food, ask questions to learn about various foods, research food.

Carefully consume– This goes along with reading labels and learning about foods. You need to be prepared to spend extra time, energy and money to purchase safe items.

Politely inquire – Forget the idea of eating what you are served and asking no questions. In a day in the life of an allergic child it would be absurd to eat without asking questions! People may be offended and irritated at your vigilance. They may even be rude. Do your best to explain the severity to inquiring minds. However, if someone is still offended by your caution, try to diffuse the situation, but do not give in and feed contaminated food to your nut allergic child.

Serve your children – Until your nut allergic child is able to police his own diet, YOU have his life in YOUR hands. I didn’t feel comfortable allowing many people the honor of helping Julia serve her plate. Until she could do it, her dad and I did it. No one will be as careful as the ones who love your child the most. There may be people in your life that you will entrust with this – just be careful!

Keep medication handy! Avoidance is your #1 goal, but it is nearly impossible. In the event that your child comes into contact with or ingests a nut product, take extreme precaution!

Benadryl…it’s a life saver, quite literally…and an epi-pen saver…and a trip to the ER saver…it is considered the fastest and best choice for less severe allergic reactions.

Zyrtec and Claritin aren’t fast acting and aren’t recommended unless you are stacking the antihistamines for a long term reaction.

Epinephrine – Consumption ought to be treated with epi-pens and an immediate ER visit. Forget the cost, forget the inconvenience. Too many avoidable deaths have occurred because of a lack of immediate action

The bottom line is that no parent of a nut allergic child ought to be willing to take a risk with that child’s life. A baby cannot tell you that he is feeling strange or that he has been contaminated. There is great danger in that. Until your child is old enough to recognize pre-anaphylaxis symptoms, he must be guarded.

We have gotten all kinds of questions about nut allergies and foods. Below are some things that you might find helpful to know!

There are dozens of nuts and that alone is confusing to consumers! It helps to know that some things are perfectly safe! Nutmeg is a seed. Coconut is botanically classified as a fruit. It is a drupe and grows on trees like some tree nuts. However, scholars disagree on its classification. Our nut allergic child is allergic to tree nuts, but can eat coconut. This is enough for me to be on the side of the coconut=a fruit scholars!

Nuts are contaminated with other nuts. “Based on recent studies, an estimated 25-40 percent of people who have peanut allergy also are allergic to tree nuts. In addition, peanuts and tree nuts often come into contact with one another during manufacturing and serving processes. For these reasons, allergists usually tell their patients with peanut allergy to avoid tree nuts as well.”

Most deaths that I’ve read about over the years have been due to cross contamination and unidentified nuts in items believed to be safe. This is tragic.

Peanuts are legumes. “Peanuts are not the same as tree nuts (almonds, cashews, walnuts, etc.), which grow on trees. Peanuts grow underground and are part of a different plant family, the legumes. Other examples of legumes include beans, peas, lentils and soybeans. If you are allergic to peanuts, you do not have a greater chance of being allergic to another legume (including soy) than you would to any other food.”

Nuts, nut oils, and nut butters are equally dangerous. Many things are contaminated by nuts because they are made in a factory with nuts or on equipment that processes nuts.

Continual testing over the years is often unnecessary. According to our doctors, the best tests are continued reactions. The fact that Julia has had pre-anaphylactic responses to contact is enough to keep us from wondering if she’s outgrown her allergy. There is no need to repeatedly do skin or blood tests unless you suspect your child has outgrown the allergy (which is really not common).

My child is not a guinea pig. Most nut allergic parents are fully aware of research and development in the area of allergies. In my experience, only a few (and thankfully none I know) are willing to use their children as guinea pigs. I cannot imagine adults allowing potentially deadly research on a minor child in their care. Avoiding nuts may be inconvenient, but allowing my child to participate in a dangerous study that has caused severe reactions is not the answer.

Simple steps can lead to safety. Nut allergic children can have their own dish set. Places like TjMaxx, Marshalls, and Ross often have single sets that are lots of fun! Personal re-usable cups and dishes are a great safety net for when you allow others to consume some nut products! If you are not 100% nut free, do not share rags with little ones! Teach your child never to accept food from anyone. Wash hands frequently!

There are many simple things nut allergic families can do to make things easier on their child. The most critical thing, though, is teaching the child how to manage their own allergy. It’s truly about survival and they must understand the dangers. While we don’t want to raise them to be paranoid or to see a world full of nut contamination, we do want them to learn to take precautions that will enable them to live safely!

Our oldest daughter recently shared a heartbreaking new story of a young girl who died as a result of eating a nut contaminated item. The family used Benadryl and epi-pens. It wasn’t enough. They thought she was stable and she died. Nut allergic parents read these things and think: “This could be my child, God forbid.” Apparently others read these stories and think, “Good riddance. One less allergy laden annoyance.”

Here’s what Hannah had to say,

This is why I get so angry and defensive when people whine and complain about not being allowed to bring nuts to gatherings or to schools or play groups or whatever. It happens in a flash. Twenty minutes later, and they couldn’t get their little girl to start breathing again.

Is your craving for pb and j or a handful of nuts so important that you’d risk someone’s life over it?

Does your little kid need pb and j so badly in their lunch, that you’d sacrifice the safety of someone’s else’s child in order for your kid to have an easy lunch?

I hope not. Because if you’re reading this and thinking, “Well, it’s their problem, maybe they just shouldn’t let their kid go to school.” Or, “Why should this affect my baby when it’s not my kid’s problem??”

Well. In that case, there’s no hope for you. Until you or your child is the cause of someone’s allergic reaction, you’ll never understand the importance of your child NOT bringing that peanut butter sandwich. You’ll never understand how dangerous it is for you to insist on bringing that nut-infested dessert to a party where a nut-allergic person will be present.

So. Think about it. Read this, and put yourself in their shoes. Trying to save their girl, after one wrong bite.

 *This post is dedicated to Julia. Her life is worth more than I could every express. She is a blessing beyond blessings!

Category: Musings
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