Learning to Live With No Answers

Learning to Live With No Answers

 

Is that a hive? Eczema? Other unspecified rash? All of the above?

 

 

Having food allergies involves numerous changes to your lifestyle and approach to everything. Especially if multiple food allergies are involved.

After the months it took to get Shaun’s skin cleared up, and finally getting the laundry list of allergies he has, we spent the next several months in a panic every time he had a single hive or eczema flare.

 

What did we feed him?

 

Double-check all ingredients and packaging

 

Pace around with the Epi-Pen and watch for more or anaphylactic symptoms

 

We finally reached a breaking point. We consulted with Shaun’s allergist and she helped ease our minds a bit. Here is the big take-away:

 

Not every hive means anaphylaxis.

 

This is incredibly important. 

 

Our allergist describes Shaun, like many others with food allergies, as a “hive-y kid”. Meaning he is probably just going to get random hives, sometimes for no reason at all. More than that, we will likely never know why he got that random hive, or what triggered it.

Shaun gets random hives (anywhere from 1 to 3 or more) almost on a daily basis! On top of all the normal levels of parental exhaustion, there would simply be no way to investigate and figure out the root cause of why he gets every single one of the hives he gets.

 

There’s good news in this though!

 

In time, you will learn your own situation and how reaction(s) present themselves. At this point, 4 years later, we can generally tell when Shaun gets a random hive, if it is truly random, or if he is actually having a reaction to something.

We are also fortunate that in Shaun’s case, he is not going to have an anaphylactic reaction unless he ingests something. So at most, we’re going to have to deal with his skin reacting (hives, eczema, swelling or some combination). But we shouldn’t have to Epi him for a contact reaction.

 

This is another HUGE reason that Linda and I constantly talk about teaching your child to self-advocate. We’ve practiced with Shaun since he was old enough to talk. Ways to describe how he is feeling if things are itchy, burning, prickly, bumpy, rough, etc. This not only helps him tell us when he is feeling those things but also helps us to determine the severity of the situation. This is an integral part of us figuring out when he is having a genuine reaction or when he is having a random hive or symptom that will pass either on its own or with minor intervention from us.

 

Early on, there is definitely a lot of frustration, worry, and anxiety over what’s happening, and why it’s happening. In a lot of cases, you won’t ever get an answer. The trick is balancing preparation, awareness, and responses to ensure that you’re able to handle whatever situation you’re presented with, in a way that’s best for everyone, and sustainable long-term. 

 

 

Living with allergies is an art after all.

 

 

 

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How to Enjoy a Beach Day with Food Allergies

How to Enjoy a Beach Day with Food Allergies

With the summer here in full swing, many people find themselves at, or wanting to go to, a beach! Hot temperatures and refreshing ocean are a perfect combination, but this becomes a little less carefree when you have allergies. So here’s how to enjoy a beach day with food allergies.

 

Establish your “safe” zone

As with just about any other situation you will encounter with food allergies, going to the beach is no different. It always helps to plan (even scout the beach if you want to be super thorough). When you arrive, try to establish your safe space early on.

When our family goes to the beach, we tend to lay out our blankets, towels, umbrellas, etc. as soon as we get there. This gives us a well-defined area to spread out and sets up a perimeter around our safe zone.

When Shaun was younger, we used to bring our PlayPen with us to the beach. It was a perfect way to allow Shaun to be there with us and also have a wholly contained area to limit exposure for him.

 

Bring all food (plus backups)

Packing your food is almost always going to be the best option in general, but especially on a beach day. Granted, it does mean you have some extra stuff to carry, but the peace-of-mind that comes from knowing you have access to safe food is invaluable.

On top of bringing all our food, we generally bring backups/multiple options for food. Nothing worse than having a food-meltdown ruin the day, or force you to have to leave early.

 

Be aware of your surroundings

This also should be a given with any outing, but on a beach day, emergency resources may be slightly less accessible than in some other scenarios, so extra precautions/awareness are usually helpful.

 

Check for:
  • Food/Snack stands. (especially at state beaches, there are usually places that sell food)
  • Ice Cream Truck(s). Pretty much a given, but this means melty/dripping dairy allergens.
  • What have other people brought? The people on the towels nearby could have peanuts, seeds, PB&J sandwiches, or any number of other possible allergens. Pay attention when they pull out their food so that you can walk around/avoid potential risks.

 

Care plan

For those that also have eczema, the beach can have other potential challenges. Between the heat, moisture, sand, and others, something is likely to trigger some increased eczema response or rashing. 

You want to do what is needed for your situation, but this does not mean you can’t go or have fun at the beach. Go through your typical care plan and make sure you have all your skin-care items with you.

Where is there fresh water nearby? Knowing this is important in case you need to wash off because of hives or eczema.

 

Although it’s not typical, packing a light cotton outfit (long sleeves and pants) will give you the option to clean your skin, apply any skin care treatment products and cover you skin with a soothing fabric to relive the flare up. This practice has saved us many times!

 

Medications

Having your medications close is always essential, but the heat and direct sunlight at the beach can be a problem, especially for Epinephrine. As we mentioned in a previous post, as well as on FARE’s website, Epinephrine has to remain within specific temperature limits to maintain its efficacy.

There are many ways to combat this issue, however. Chief among them being several insulated carrying bags that help maintain the temperature of the epinephrine or any other temperature-sensitive medications you might need to carry. We have used the ones made by Allermates. However, there is another one made by ParcMedic, which is also highly reviewed.

Additionally, there is a slightly different kind of bag made by Frio that people swear by. They have a unique technology that allows it to cool using evaporation, eliminating the need for ice packs or coolers to put your medications in. Most of these are advertised as insulin bags, but they are useful for Epinephrine auto-injectors as well, and many other allergy families and friends we know far prefer these to other carrying options for the beach or other hot, outdoor activities.

 

Sun protection

Sunscreen, swim shirts & hats are part of our beach routine. In general this is part of health skin care but it becomes even more critical with sensitive skin.

Sunscreen will get its own post in time but here are the two things to keep in mind. First, sunscreens may contain ingredients you are allergic to!! Always read the label! Secondly, if your skin is sensitive it might some trial and error before you find one that works well for your skin. We have had excellent luck with Blue Lizard.

 

Exit plan

As with any other outing, you want to go in with a plan to get out. This is not to say you want to leave early, but this also contributes to lowering everyone’s stress levels and allowing you to actually enjoy the day at the beach, rather than merely live through it.

 

 

 

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Epinephrine Shortages and What You Can Do

Epinephrine Shortages and What You Can Do

 

 

As of at least August 2018 (though some sources mention it as early as May of last year), there has been a shortage of available epinephrine for consumers.

 

 

This is a scary situation, as epinephrine is the single most crucial remedy for an anaphylactic reaction to a food allergy. Proper and timely administration of epinephrine is often the difference between a person living or dying from a food allergy.

 

FARE, of course, has a great page about the shortage that they continually update. This same page also links to HealthMart, which has a tool that you can use to find independent pharmacies in your area that may have the availability of stock of epinephrine.

 

There are also several other places (MarketWatch, AllergicLiving, The Lancet) that comment on the issue, and each has some good advice/tips on dealing with the shortage and finding available epinephrine auto-injectors in your area. Most of these are several months old, being written after the initial deficit was announced, but still, have relevant information.

 

Despite all of that, you do have options.

 

Extended Expiration Dates

Pfizer and the FDA have issued extensions on the expiration dates printed on some lots of EpiPens, to alleviate some of the shortage (Link). “The extension of the expiration dates does not apply to EpiPen Jr® (epinephrine injection, USP) 0.15 mg Auto-Injectors and its authorized generic version. Patients must continue to adhere to the manufacturer’s expiry date labeled on EpiPen Jr® 0.15 mg and Epinephrine Injection, USP Auto-Injectors 0.15 products.”

 

Independent Studies on Effectiveness

In addition to the above, there have been independent studies conducted indicating that EpiPens retain a high level of concentration and effectiveness long after their labeled expiration dates. CNN posted an article that links to one such study (and several other resources)

 

We have always kept ALL of Shaun’s expired EpiPens as backups for his valid, non-expired, auto-injectors. Our thought process has always been that we’d rather have expired epinephrine, than none at all.

 

Alternative to EpiPen

There are alternatives to EpiPens as well. Trained medical professionals can, and will, sometimes use epinephrine drawn from a vial and injected via syringe. Most people who aren’t trained professionals though, generally aren’t comfortable with this method, especially in a chaotic or tense moment when you, or someone you care about, may be in danger.

 

Auvi-Q is a relatively recent addition to the auto-injector market, and in a lot of ways is already better than the EpiPen (in our opinion). It is considerably smaller and more comfortable to carry and tends to be the one we grab if we want to just put one in our pocket, rather than bringing Shaun’s entire backpack with us somewhere.

 

 

The Auvi-Q also has voice instructions on how to administer it, should you ever be in a situation where someone may be completely unfamiliar with how to give an auto-injector. Auvi-Q offers its “Kaléo Cares Patient Assistance Program,” which can significantly reduce, or even offset the cost of their auto-injectors completely.

 

More treatments are being developed every day. Hopefully, Big-Pharma will embrace the scientifically-proven concentrations that epinephrine can maintain for years after their labeled expiration dates. And ideally, shortages will start to decrease soon.

 

 

 

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Food Allergies: Learn the Basics

Food Allergies: Learn the Basics

 

There is a shocking level of misinformation or lack of information where food allergies are concerned. And with it being Food Allergy Awareness week it seems like a great time to start at the beginning.

Today we will explore the basics of food allergies by providing information based on our own experience along with directing you to some resources. FARE (Food Allergy Research & Education) is an enormous resource with an incredible amount of information!

Note: If you live with food allergies you may already have some experience with these topics, please share them with someone who might need a better understanding of your life! And stay tuned for more content this week!

 

What a food allergy is NOT

Food allergies are NOT a food intolerance.

While, intolerance to food causes a person unwanted and, in some cases, severe symptoms, that person is not at risk of having an anaphylactic reaction.  

 

What a food allergy IS

A brief explanation …

A food allergy causes a person’s body to see a food protein (in some cases other things; bee stings, latex, etc.) as something dangerous. When the food protein is introduced to the body, the immune system responds to the perceived danger by producing antibodies to fight it. The antibodies produced can then trigger the anaphylactic symptoms.  

 

FARE built this great myth-busting resource. It goes a bit deeper into some common misconceptions about food allergies, and the facts that should be shared. Worth a look!

 

Anaphylaxis

In its simplest form, anaphylaxis is a severe and potentially life-threatening reaction triggered by a person’s immune system when the body is exposed to an allergen.

Anaphylaxis requires medical intervention, usually in the form of epinephrine, potentially other medications and a call to 911.

 

Always consult your allergist to figure out the best action plan for your specific needs.

 

If you want to explore anaphylaxis further, There is plenty of excellent information here and here.

 

A New Epidemic

There has been an alarming increase in the number of food allergies throughout the country. As of this year, there are more than 32 million Americans with food allergies.

 

Food Allergies: Learn the Basics Epidemic 32 Million 377% Increase

 

 

This is why it is so important, now more than ever, to help spread awareness!

 

 

Knowledge is Power

The more we know, the more prepared we can be!

Of course, it is impossible to control every aspect of every interaction you will have each day. But luck favors the prepared.

We have laid out here the most basic information of food allergies and anaphylaxis. Let this knowledge be a starting point!

 

 

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How I Became an ‘Allergy Dad’ (and You Can Too!)

How I Became an ‘Allergy Dad’ (and You Can Too!)

 

The short answer is, my wife had a baby (duh). But being an ‘Allergy Dad’ is not something most of us would pick. It is generally thrust upon us regardless of any other plans we’ve been making for our lives. It is scary, challenging, and frustrating among many other things.

The good news is, it IS possible. Food allergies become part of your life. And being an ‘Allergy Dad’ is now something I wear like a badge of honor.

Here’s how I became an ‘Allergy Dad,’ and some tips to help you do it too!

 

Be There

The trick is not to overthink this one. I mean it in the literal sense of physically being there. As in doctor’s appointments, allergist appointments, G.I. appointments. Skin tests and blood tests etc. Anything and everything you can physically get to (especially early on) GO!

This is incredibly important not only for showing your support to your partner and your family, but it is also beneficial exposure for you to hear what the doctors have to say yourself. Be the second set of ears when everyone is exhausted, and you’re trying at 2:00 am to remember that one thing the doctor said would help calm those angry hives.

 

Know your action/response plan

Similarly, this goes along with the ‘Be There’ section. But if you’ve done the first step and been to the doctors’ appointments, and know the allergens, you all can work through this step together much more comfortably.

It is vital that every immediate caregiver has and knows what the action plan is if your child has a reaction. We have made 5×7 laminated notecards with all the essential information on it, and everyone in our family has one, along with his school, school nurse and teachers.

A topical skin reaction is different from an ingested food anaphylactic reaction, and they both require different remedies.

There are resources available in many places, but this one will give you some tremendous, base-level knowledge around food allergies, and this one will give you some tips to daily living with food allergies.

Having your action plan in place ahead of any major incident is the key to some level of contentment, and confidence in your child’s safety.

 

Let go of the ‘Fixer.’

At the core of most men, is the desire to be the protector, provider, and hero. This will undoubtedly be one of the hardest challenges as a new Allergy Dad. The realization that food allergies cannot be ‘fixed.’

 

You can’t DIY your kid’s immune system. And no, it isn’t fair.

 

So, if you can’t fix it, then what do you do? All the things I’ve mentioned so far in this post are a great place to start. Add to the above points a level of patience, that you never thought possible, and you’re well on your way.

While you can’t ‘fix’ your food-allergy child, it doesn’t mean that they’re broken. You can certainly still have an incredible relationship with your child, and be their superhero. You just have to think about it a little differently.

 

Find Your Village

The adage “It takes a village to raise a child” is especially true for allergy parents. The more in-depth meaning behind this African proverb says that an entire community of people must interact with children for those children to experience and grow in a safe and healthy environment.

Surround yourself with people who want to be a part of your child’s life. These people will quickly stand-out as they will be the ones willing to do some research on their own. They will want to learn what your child’s food allergies are and the best way(s) that they can help keep your kid safe.

They won’t roll their eyes when you have to pass on an invitation because you know you can’t control enough of the variables to be able to ensure your child’s safety. These are the people that will be there with you on your journey. You will need them.

 

Speak Up

This one is last because it is simple, critical, and often tricky to execute well. People always talk about a ‘mother’s intuition,’ but this is very real for fathers too. Trust your gut, and say something when you have concerns. I’d rather my good-intentions ruffle some feathers than have something horrible happen because I didn’t express my doubts.

Be it to your spouse, doctors, teachers, nurses, social workers, it doesn’t matter. It’s always better to voice those thoughts and be able to talk through them, rather than say nothing, and let it stew in your mind.

This is where you get to be that strong advocate for your allergy kid. Help educate other people about food allergies, and create an overall better and safer environment for them to live and grow.

 

Most of all though, when you tuck your child in at night, and they give you a kiss and whisper “I love you, Daddy,” you’ll have earned your cape that day.

 

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