Allergy Shmallergy

Simplifying life for families with food allergies.

Food Allergies: Overcoming Disagreements November 27, 2017

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The holidays are a magical time – filled with hope and kindness.  But when you have food allergies, holiday gatherings are sometimes filled with the possibility of being excluded, disappointed, or the fear of having a food allergic reaction.

As parents and patients, we feel like we are constantly educating others about food allergies.  Our extended families and friends surely should know by now how real and severe a food allergy can be – shouldn’t they?!  Unfortunately, many times our family and friends don’t understand.  They underestimate the severity of a reaction and the amount of time and energy we put in to preparing for a regular day – never mind a holiday!  We often feel let down and angry when others don’t take food allergies into consideration or are set on upholding their traditions at the expense of someone else’s health and safety.

These disagreements around the holidays can set off a chain of unhealthy interactions that could cause relationships to strain.  Don’t end your relationship with family or friends.  Try the techniques outlined in the article below first and see if you can teach them about what your life with food allergies is really like.

Please read this article I wrote, published in the magazine Allergy & Asthma Today by the Allergy & Asthma Network, for more information.

http://bit.ly/2ncAJHY

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The Dangers of a Dairy Allergy November 17, 2017

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Three year old, Elijah Silvera, was attending a regular day of preschool in New York City recently, when preschool workers fed him a grilled cheese sandwich despite school papers which formally documented his severe dairy allergy.  Elijah had a severe allergic reaction and went into anaphylaxis.  Standard procedure for anaphylaxis is to administer epinephrine and call 911 immediately.  Instead, the school called Elijah’s mother, who picked up her child and drove him to the hospital herself.  Doctors in the emergency room tried but were unable to save him.

 

Dairy allergy is the most common food allergy among young children.  And, although the peanut can produce some of the most severe allergic reactions (as well as some of the most tragic headlines), an allergy to milk products can be life-threatening.  The myth that a dairy allergy is not serious and doesn’t require as much vigilance causes great frustration to many who are allergic to milk, as does the idea that a food is “allergy free” if it does not contain nuts. To those who live with it, a dairy allergy requires an enormous amount of preparation and education since milk is an ingredient in so many products.

 

Dairy is cow’s milk and found in all cow’s milk products, such as cream, butter, cheese, and yogurt.  Doctors sometimes advise patients with a dairy allergy to avoid other animals’ milk (such as goat) because the protein it contains may be similar to cow and could cause a reaction.  Reactions to dairy vary from hives and itching to swelling and vomiting, to more severe symptoms such as wheezing, difficulty breathing, and anaphylaxis.  Strictly avoiding products containing milk is the best way to prevent a reaction.  The only way to help stop a severe food allergy reaction is with epinephrine; patients should always carry two epinephrine auto-injectors with them at all times.

 

Just like other allergens, cross contamination is a concern for those with a dairy allergy. Even a small amount of milk protein could be enough to cause a reaction. For example, butter and powdered cheese (like the kind you might find on potato chips) are easily spreadable in a pan, within a classroom or on a playground.  And, as with other allergens, hand sanitizer does NOT remove the proteins that cause allergic reactions.  Doctors recommend hand washing with good old soap and water – but wipes work in a pinch.

 

Those allergic to dairy must not only avoid food; they often have to look out for health and beauty products too.  Dairy can be found in vitamins, shampoo, and lotions.  It is critical to read the ingredient labels of every product you buy each time you buy it as ingredients and manufacturing procedures may change.

 

In the United States, any food product containing milk or a milk derivative must be listed as DAIRY or MILK under the current labeling laws (see The Ins and Outs of Reading Food Labels, Aug. 2016).  If you are living or traveling elsewhere, this list of some alternative names for dairy may be useful:

 

milk (in all forms: goat, whole, skim, 1%, 2%, evaporated, dry, condensed, etc)
butter (including artificial butter and margarine)
cream
buttermilk
sour cream
half and half
yogurt
cheese
ice cream
custard
sherbet
pudding
chocolate
ghee
whey (all forms)
casein
caseinates (all forms)
casein hydrolysate
lactose
lactulose
lactoferrin
lactalbumin (all forms)
diacetyl
rennet casein

 

Let’s spread the facts about dairy allergy so that our schools and teachers better understand how to accommodate and care for students with food allergies.   Any allergen can produce severe, life-threatening allergic reactions and all food allergies should be taken seriously and managed with attention.  I sincerely  hope that by informing others we can prevent another tragedy like the one the Silvera family was forced to experience.

 

Positive Parenting with Food Allergies September 29, 2017

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Last year, I had the pleasure of speaking with Lyndsay Edwards of Allergy Blog Awards UK.  In her podcast, she asked a lot of thought-provoking questions on the topic of parenting a child with food allergies.

 

Because of the challenges and risks associated with food allergic reactions, it is critical to raise food allergic children to be confident, resourceful, and self-advocating.  And all of that begins with a good attitude towards food.

 

Here is the transcript of Lyndsay’s well-crafted podcast [or listen here: Allergy Blog Awards UK – Allergy Shmallergy Living Positively with Food Allergies].

 


 

So, I know your son was diagnosed with a dairy allergy at 6 months old and other allergies by the time he was just 15 months old, can you just take us back to that time and what it was like for you getting the diagnosis?

 

Despite his eczema, acid reflux and asthma (conditions that I now understand to be related to food allergies), I was in denial.  Even though I followed her instructions to the letter, I scoffed at our pediatrician’s recommendation to avoid feeding my son a whole host of allergens as we introduced first foods.  “He’s probably not allergic to any of these!” I remember saying.

 

When she called us to discuss the results of my son’s blood test, revealing that he was allergic to eight different foods in addition to environmental allergens, I was completely overwhelmed.  I couldn’t stop wondering:

 

What does this mean Not only the test results, but also in a bigger sense:  what does this mean for his life?  Will he have a normal life?  And more importantly, what can I feed him for dinner tonight?!!

 

I found myself grieving for the hopes and dreams I had imagined for my child (like baking cookies and spontaneous trips to get ice cream), but then my husband snapped me out of it.  He reminded me that we would find work arounds.  And, if they didn’t exist, we’d create them!  Very quickly, THAT became my focus.

 

 

How do you cater for your son at home?  Do you all eat the same?

 

Because my son was allergic to so many foods, I had to learn how to cook (and fast!).  Unbelievably, he’s my most adventurous eater.  He loves everything seafood (no matter how crazy the dish), sushi…  and he’s consistently adding requests to his list.

 

These requests inspire me to learn how to cook all kinds of intimidating international cuisine.  No one who knows me would have EVER guessed that I regularly cook Chinese food or Persian or make all kinds of sushi.  In high school, I once burnt soup!  SOUP!

 

When he was a toddler (and an only child), I was making separate meals for my son.  But being a short order cook isn’t my strong suit and I didn’t want my son to feel like I was treating him differently because of his allergies.  In his own home, he should feel safe and included.  As I got better at reading recipes, swapping out his allergens for substitutes, I started serving only one meal (what a relief!).  I also began finding meals with optional parts (like tacos that you could stuff with cheese or not and make-your-own pizza night).  I now have quite a collection of tried and true recipes that are free of peanuts, tree nuts, sesame seeds, dairy and in many cases egg (an allergy my son has since outgrown).

 

 

When did you start your blog and what inspired you to do so?

 

It was very important to us to raise a confident child who felt capable in the world.  Food allergies are very stressful.  I wanted to share simple solutions with other parents and put out useful information so that families can remain calm and make informed decisions.

 

 

One of the things that really stood out for me on your blog is how you focus on teaching your son about his food allergies in such a positive way so that he doesn’t feel left out or sad, can you just explain how you do that and what has worked for you and your son?

 

We have repeated the message that everybody deals with something – sometimes that “something” is invisible to the eye, like food allergies.

 

We try to downplay the importance and emphasis on food.  For example, we try to reward achievements with activities rather than treats.

 

And, we remind all of my kids that the best party of any party is always the company, hardly ever the cake.

 

Involve your kids in problem solving.  We can’t control the fact that my son has food allergies, but I can give some control OVER them by getting his input on overcoming obstacles.

 

Prepare, prepare, prepare to provide special treats in anticipation of special events.  Bring a gluten-free cupcake to the party; pack a sesame-free hamburger bun for the barbeque; carry a little dairy-free butter out to dinner.  Create positive experiences around food and demonstrate how easy it is to overcome challenges.

 

Let him vent!  We’ve taught my son the names for his feelings and encouraged him to talk about them.  First, children need to know the language to use to express their emotions.  Then they can engage in an open dialogue to release stress and give parents an insight into how they are experiencing the world.

 

 

Ok, before I get to my last question, can you tell everyone where they can find you on social media, your website, etc?

 

Yes, of course!

[You all know where Allergy Shmallergy is! shmallergy.wordpress.com]

Twitter: @shmallergy

Facebook:  Allergy Shmallergy

Instagram: shmallergy

 

 

And my final question is if you could give allergy parents one tip, what would it be and why?

 

Help prepare your child to negotiate the real world: practice asking questions, allow them to speak to a waiter, in short: EMPOWER them!  Give them the tools to tackle the world!

 

And, provide a safe place for them to come home to. A safe home environment (free of allergens) as well as a safe space psychologically where they can relay their triumphs and articulate their frustrations without judgment or anxiety and find support.

 

That’s two tips (sorry!), but I hope they’re both helpful!

 

The Language of a Food Allergic Reaction September 11, 2017

A food allergic reaction can vary from mild to severe and typically takes place shortly after eating or exposure.  All reactions require immediate attention.  But with severe allergic reactions, called anaphylaxis, minutes matter.

 

As kids head back to school and begin new activities, it’s important for EVERYONE to become familiar with the symptoms of anaphylaxis and what it language a young child might use to describe it.

 

Symptoms of Severe reaction

Some of the symptoms of a severe reaction are obvious: hives, vomiting, coughing.  But for others, we need to rely on verbal clues.  Young children may describe an allergic reaction a little differently than adults would.

 

Language of Food Allergic Reaction

 

Should you suspect that your child, or one in your care, is experiencing anaphylaxis, act immediately:

  1. Administer epinephrine, holding pen for 5-10 seconds in meaty part of outer thigh.
  2. Call 911.
  3. Contact parents.

 

Minutes matter when it comes to treating anaphylaxis.  Knowing the symptoms and the different ways it might be described will help you save a life.

 

 

The Fire Drill – 5 Key Lessons from an Intensely Scary Night February 22, 2017

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I had been home from the restaurant only ten minutes with my preschooler almost tucked into bed when I got the call.

 

“Miles isn’t feeling well. He’s nauseous and is having terrible asthma. We’re heading home early,“ my husband informed me calmly. My husband and two sons left our regular sushi dinner to attend a tennis lesson, still chewing as they walked out the door.

 

My oldest son has suffered from asthma since he was 10 months old, but this just didn’t sound like the typical onset of asthma for him. Something about Eric’s voice suggested something “other.” “Do you think it could be a food allergy reaction?” I asked.

 

“I don’t know; but we’re getting home as quickly as possible.”

 

Completely abandoning my daughter in her bed, I walked to our emergency medication and unsheathed the freshest EpiPen. I was reviewing our emergency action plan as headlights tore into the driveway.

 

Calm but focused, I greeted my son at the door. He was red and hot and choking out words as I tried to check in with him about his symptoms. He could barely speak. He felt nauseous and clutched his stomach as he made his way into the bathroom, afraid he would throw up. His description of his symptoms came out in – sometimes inaudible – spurts. He was fighting for breath. He felt and looked worse than I had ever seen him.

 

While my hand calmly rubbed his back and my eyes scanned his face assessing the situation, a million thoughts raced through me in a nanosecond. Was it something he ate? Was he possibly reacting to a new allergen? Was this anaphylaxis or pure asthma…or both? The flu and other upper respiratory viruses were spreading so rampantly that nearly a third of my son’s class was out that week. And, he had mentioned having a headache and feeling a little nauseous after school – something that had seemingly subsided by dinner.

 

No matter how I weighed my options, a few small words reverberated in my brain: two systems. Most emergency action plans state that if two or more essential systems (gut/stomach, lungs, skin, heart) are affected in an allergic reaction, epinephrine should be administered immediately. I held up the auto-injectors behind my son’s back, signaling to my husband that we might need to use them. Neither of us have had to use an auto-injector on my son before (knock on everything wooden). We knew it was probably the right call now. We were both looking for the other to validate that decision.

 

As with all things, I wanted the use of the auto-injector to be the absolute right decision. I called my father-in-law, a doctor of more than 40 years, for one last vote on how to proceed. It was a brief conversation. “Get him breathing! Give him albuterol, I’m coming right over.”

 

Having caught sight of me waving the EpiPen in the air to my husband, my son had now begun to sweat with panic – making everything much worse. I sat him on the couch and tried to cool him off for just a moment – considering the facts again. Asthma. Nausea. No throat, mouth, or tongue swelling. No hives. No clear relationship between this reaction and food – but always a real possibility.

 

I looked at my sweet boy once again, suffering for breath, and noticed his pallor wasn’t quite as red any longer; it was now tingeing blue. I grabbed the epinephrine and pulled off the safety cap. At that very moment, my brother-in-law (another doctor) and father-in-law walked through the door. With stethoscope in hand and exuding a calm and caring in doses that make me tear up in appreciation even now, they examined my son and set him up on a nebulizer – a machine that delivers asthma and other respiratory medications as a penetrating, breathable mist.

 

We monitored Miles’ pulse (which was steady) and his breathing (which was labored and difficult). It took a lot of medication and effort, but Miles began processing air more efficiently. I didn’t realize until the second hour of treatment that I had been clutching his auto-injector the entire time.

 

As Miles’ color returned and the dust began to settle, he began to recall details about his day – clues that might have been helpful earlier. Like, the fact that he experienced asthma during recess at school. As he continued to improve, we noted that he was simultaneously experiencing a migraine, which can bring about nausea. Together, we determined that this was likely an acute asthma attack and not a result of his food allergies.

 

All four adults watched Miles for another several hours (well into the night) before anyone was willing to even entertain sleep. And, by then, sleep didn’t come so easily. I awoke in a gasping sweat several times that night and slipped into my son’s room to check on him. At around 5:45 am, I placed my hand on his back and he broke the quiet of the pre-dawn, humorously stating, “Mommy. Your hand is like a furnace!” Smiling and with great relief, I knew the sun would come up that morning and all would be well.

When I relayed these events to my own father, he captured it perfectly. “You had a fire drill last night.” We certainly did. And, as with any good training exercise (intentional or not), we learned some valuable lessons that night.

 

  1. Trust your instincts. I knew we needed to use epinephrine. Had there not been two doctors in the family within arms’ distance from me, I would have absolutely used it. And, so would my husband. Even though it was not anaphylaxis and everything turned out well, I STILL regret not having used the auto-injector sooner. I had my doubts about a food allergy reaction for a number of reasons. The afternoon nausea as well as the absence of hives and swelling gave me pause – which is why I called my father-in-law. But, did being right about his diagnosis make me feel better about my hesitation? No. Severe food allergic reactions can present themselves with a number of symptoms and they can escalate very quickly.

 

  1. Always, ALWAYS carry your epinephrine auto-injector with you. EVERY TIME. And, make sure that your friends, family and/or whoever is caring for your child knows how to use it (procedures are slightly different for Auvi-Q, the Adrenaclick and the EpiPen, so I recommend reviewing often). In our case, we accidentally forgot to transfer the auto-injectors from my purse to my husband’s bag, taking for granted that he’d no longer be around food; out only for an hour to play tennis. Thankfully, we live two minutes from the tennis courts. But had they been further, my husband would ABSOLUTELY have needed those auto-injectors.

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  1. As if you needed an extra reason to carry your auto-injectors: Those who have asthma are more likely to suffer from severe food allergic reactions– particularly if that asthma is not well-controlled. Asthma can complicate food allergies. Asthma occurs when there is narrowing of the airways, making it difficult for an individual to take in the proper amount of air. In my son’s case, his lungs were taking in so little air that initially my father-in-law couldn’t hear any movement with his stethoscope. No wonder he was turning blue. In an emergency situation, epinephrine can be used to treat a severe asthma attack. We were milliseconds from using it.

 

  1. If you use an epinephrine auto-injector you must go the nearest emergency room immediately. This is not because you gave the injection. Rather, those having severe food allergic reactions need additional medication and treatment. Furthermore, patients can suffer something call a bi-phasic reaction – that is, a second, delayed bout of anaphylaxis. It is estimated that up to 20% of patients suffer such a reaction.

 

  1. Once Miles went to sleep, we recapped the night with my father-in-law, who’s served in some fast-paced emergency rooms. I’ve been repeating something he said that night to everyone who will listen:

“We used to tell surgical residents,” he began, “‘If you’re considering performing a tracheotomy, then you need to do a tracheotomy.’”  The same holds true for anaphylaxis. If you think you might need to use an auto-injector, then you DO need to use one. If you’re considering it, then the time is now.

 

I’m beyond grateful that our story ends happily.  I pray you all never have to experience the intensity of a severe reaction (whether that be from food allergies or acute asthma).  But I hope that by sharing our experience and the lessons we learned, your story will end happily, too.

 


 

Essential Resource:

I can’t recommend enough this informative piece on when to give what medication during a severe allergic reaction. The information contained in this article echoed in my head during the above incident.

 

From the Food Allergy Treatment Talk blog:

Putting the Fire by Dr. Brian Schroer

 

Help Fund a Cure for Food Allergies January 10, 2017

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“Why can’t I just be like everyone else?”

If you have a child with food allergies, you’ve likely heard this heartbreaking sentiment from your kid.  We’ve all had to console this same child who just wants to put aside his/her food allergies and anxieties even if only for a single day.

Parents would go to any length for the sake of their kids.  Food allergy parents often do by preparing safe food, educating others, strategizing for school, holidays, play dates, and celebrations.

 

But how many of us have done 3,000 burpees for them?

 

That’s what fellow food allergy parent, Mike Monroe, plans to do on January 25th in order to raise money for ongoing research for a cure for food allergies.  Mike’s goal is to raise $50,000 to support cutting-edge research examining novel applications of cellular therapy for the millions of kids with food allergies being explored at Children’s National Medical Center in Washington, D.C.

 

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marines_burpee by U.S. Embassy Tokyo via Flickr

 

What’s a burpee, you might ask?  It’s a combination of push-up/plank, squat and jump performed in combination.  Try one right now!  Do another.  I think you’ll agree: it’s NOT easy!  Mike plans to complete 3,000 of these in under 12 hours.

What can you do to support Mike?

 

1.  Watch this video about Mike’s incredible motivation – his son, Miles:

 

 

2.  Consider a donation:  Every little bit helps get us all closer to a cure for food allergies.

3K Burpee Challenge for Food Allergies

3.  Share this post!  Please share this with your family and friends, share via Facebook, Twitter, Instagram and other social media channels.  Let’s support Mike and researchers to help our own kids and the millions who face life threatening food allergies every day!

 

 

Donate:

http://childrensnational.donordrive.com/campaign/BurpeeProject

Blog:

http://www.3kburpeechallenge.com/

Facebook Page:

https://www.facebook.com/3KBurpeeChallenge/

YouTube Video:

https://www.youtube.com/watch?v=KSVGTkFtnyk&feature=youtu.be

 

Food Allergies and Family – Disagreements Not Break-Ups April 12, 2016

I hear stories all the time from food allergy parents that their family members aren’t taking their child’s food allergy seriously.  And, this – of course – can have serious implications.  I’m also saddened to hear when this difference in perspective leads to family disagreements – or worse, families cutting one another off completely.

 

Our parents (our children’s grandparents) didn’t grow up with this alarming rate of food allergy.  In fact, many of them didn’t know a single person with a diagnosed food allergy.  Times have changes and current parenting is more active and vigilant than it was 30 years ago.  I’ve explained to many a grandparent that the rise in food allergies is not a trend of parent over-sensitivity or as a result of over-protectiveness, but -in fact- an actual, black and white medical diagnosis.

 

Grandparents and other family members may not understand the amount of work and preparation it takes to safely raise a child with a severe food allergy: the advanced preparation when eating out; repeated education of others; familiarity with labeling laws (such as the FDA’s FALCPA in the United States), alternative names for allergens and a general sense of where it might pop up and cause problems; the worry about our kids and the exclusion we fear they face.  Let’s face it, none of us were prepared for the intense amount of work prior to our family’s first food allergy diagnosis.

 

If there’s one thing I know for sure though, it’s that a parent’s love for their child is fierce.  It knows no bounds.  As food allergic parents, that fierce love we have for our children and our instinct to protect them may come off a little strong.  And, understandably so when we feel like their lives are in danger.  But in the face of difficult decision-making, our anxiety over their well-being may not offer the patient, gentle voice that our family and friends need in order to truly hear our concerns.

 

It doesn’t help that food allergy parents feel disrespected when their own parents don’t fully abide by or outright disregard their guidance about how to feed (and therefore protect) their children.  Food allergy parents can feel betrayed when others are unwilling to make changes to protect their children.

 

So, what can you do when you’re at odds with your family over your child’s food allergies? 

 

First, have a kind but firm talk about the allergies and severity of the possible reactions.  Do this when your child is not present.  Expect a lot of questions, so come prepared with answers from your allergist or pediatrician.  Bottom line: be informative and remain calm.

 

Reminder: don’t put your parents (…siblings, friends…) on the defensive.  Remember the “I” statements you were taught in school.  Now’s the time to employ them.  In essence, phrase your emotions with “I feel…”  rather than pointedly, “You” statements.  “I’m worried that Charlie will have a dangerous allergic reaction because he’s a toddler who doesn’t know the difference between peanuts and raisins,” rather than “You’re not listening to me: put away the peanuts!”

 

Share your learning curve.  Relate to them by reminding yourself (and them) how overwhelmed you first felt when you first received your child’s diagnosis.  They probably feel this way too right now: they’re trying to take it all in and food allergies have likely seemed very far off and remote to them.

 

If necessary, spell out the seriousness.  It can be hard to truly admit – most especially to yourself – the possibility of a severe food allergic reaction and its real consequences.  I have a lump in my throat just writing about it.  Watch the Discovery Channel’s 2013 documentary “Emerging Epidemic: Food Allergies in America” with your parents and siblings (again without the kids present).  The first 10 minutes of this multifaceted documentary deal with an anaphylactic reaction and is a firsthand example of the dangers of food allergies.

 

Remember that old habits die hard.  Most habits are not malicious, but they can be dangerous.  My own father had a nightly habit of snacking on a bowl of nuts, which he continued to do unconsciously when we visited.  When my son could crawl, I reminded him again that this wasn’t safe.  I was frustrated having to restate this every visit, so to drive the point home, I told him, “These nuts are like arsenic for my child.  Leaving them on the table is the equivalent of leaving a loaded gun for my toddler to figure out.”  It clicked immediately.  My dad apologized profusely and has since been phenomenally careful with my son’s allergies.

 

Invite them to a doctor’s appointment.  Allow them to ask as many questions as they have.  Maybe give your allergist or primary care physician a heads up so they know to allow a little extra time for questions and answers.  Hearing the information from a medical professional often underscores what you’ve been saying all along.  You know how your kids listen to their teachers but not you?  Your parents might be the same way.

 

Remind them that as much of an inconvenience as it is for them to adapt to your allergy-friendly lifestyle, assure them that it is SIGNIFICANTLY more so for you and your family.  Make it easier for them to navigate by suggesting some of the tips in The Host’s Guide to AllergiesThe Host’s Guide: Part II; and the Host’s Guide: Part III.

 

Invite them to participate in your lives by organizing activities that DO NOT revolve around food or meals.  I know that’s hard when we talk of family because food and socializing traditionally go hand-in-hand.  But, there’s no need to sacrifice your relationship with even the most obstinate family member – just take away the point of contention:  food.  I know that tensions can flare in the process of trying to win over someone’s mindset, but – by doing other things and removing the obstacle – perhaps you will both come to an understanding about your different perspectives.

 

Families are important.  They are our best cheerleaders.  They remind us of who we are and where we come from.  And, they teach our children all kinds of lessons we can’t impart alone.  By trying to handle differing opinions over a difficult issue like a child’s food allergies in a calm and collected way, we are also modeling great conflict resolution to our kids who pick up on more than we’d like to believe.

 

Food allergy parents need support too.  Parenting is hard.  Parenting a child with life-threatening allergies to something as common as food makes it exponentially more challenging.  Families should be there to help out and pat us on the back for encouragement, to give us a cup of coffee (or glass of wine) after a particularly rough day.  And they should be available to envelope our kids in love, support and safety so they grow up to be confident, self-assured adults with loving families of their own.