Five to Stay Alive!

While managing allergies and anaphylaxis has become the norm for most of us, for those AMAZING friends and family who interact with our loved ones with allergies, the thought can be overwhelming (to say the least)!  OrAAA wants to help you out!  Check out our Five to Stay Alive (and share them with those awesome loved ones)!!

1. Learn The Signs of Anaphylaxis

First and foremost,  the best way to ensure your kiddo (or other loved one) gets assistance quickly is to ensure that everyone around them is aware of the signs of anaphylaxis!  You can learn more about the signs of anaphylaxis here.

2. Know your loved one's Emergency Action Plan.

Has your allergist given you an Emergency Action Plan or Food Allergy Action Plan?  Make sure you know what your loved one's plan says.

3. Take 2...Every time, All the time!

Did you know that an recent study found that only (approximately) 40% of patients had epinephrine with them (at appointment time) despite 60% knowing that they needed to carry it all the time (study here)?  Make sure you have AT LEAST two epinephrine auto-injectors with you all the time!  FARE has some great door hangers (here) that can help remind you and your loved one!

4. Learn how to administer Epinephrine.

Since successful administration of epinephrine is key to good outcomes, it is imperative that everyone around your loved one knows where their epinephrine is kept and how to administer it.

More than likely (if you are in the US), your loved one is carrying one of 3 auto-injectors.

If your loved one has an EpiPen, EpiPen Jr., or Adrenaclick, check out this video for a quick how-to on these auto-injectors.

If your loved one has an Auvi-Q, check out this video!

5. Make sure you (or your loved one) are wearing Medical Id Jewelry.

In an emergency, Medical Id Jewelry is the best way to ensure someone can tell responders important health information about your child quickly!  Vital info to include: Name, Allergy, medication (and location if possible).  You can read here for more information from FARE about the importance of Id!

Remember, while reactions can be frightening, preparation can make it SO much easier!

The Elephant In The Classroom...Part Two

In our last post, we decided to take on the proverbial elephant in the classroom...the life threatening nature of food allergies (and the implications of LTFA's in school).

Reporting of death from anaphylaxis is tricky at best.  That being said, deaths at school (from anaphylaxis) have (as far as we know) been fairly accurate and consistent as the internet has become an integral part of our lives.  We live in the age of instant information, and, as such, we learn about these tragedies quickly.  (For a discussion on why death due to anaphylaxis reporting is inconsistent, check out this discussion, forewarning, it is lengthy).

Despite an increase in reported deaths in schools, they appear to be relatively infrequent.  That being said, anaphylactic reactions at school are not.  We (OrAAA) have both had incidences of our children having allergic reactions at school (my daughter went into anaphylactic shock in November of 2013).  According to the CDC, somewhere between 16-18% of food allergic children have had at least one allergic reaction at school, with 25% of those reactions ocurring in students that were not previously diagnosed with food allergies (http://www.cdc.gov/healthyyouth/foodallergies/pdf/13_243135_A_Food_Allergy_Web_508.pdf).  These appear to be consistent with OrAAA's recent survey.

While students with food allergies (in general) and allergic reactions in school appear to be increasing, access to accommodations that help ensure the safety of food allergic students can be difficult to codify (nonetheless enforce).  Protests over accommodations are becoming more common, often pitting parents of food allergic and non-food allergic children against each other (at a time when support and unanimity is most needed).    Retaliation, harassment, and bullying (of both students and parents by both students/families and school staff) are common occurrences.  Battles over accommodations often include complaints or administrative hearings of different types.  In our study, close to 15% of parents reported having filed at least one complaint on behalf of their child/themselves.

What has become clear is that while this issue is not currently being remedied in a time and fashion that ensures the safety of food allergic children currently in school, it is an issue that will have to be addressed soon.  Check back with us next week for our thoughts on the solution to this problem!

The Elephant in The Classroom, Part One

Normally, we stick to try to focus on the positive.  We are a "thriving with food allergies" kind of group.  However, we have noticed a trend...schools treating life threatening food allergies as if they were anything but that.  So...here we go.

The subject of children who die due to anaphylaxis in school is not one often talked about.  Sure, we talk about our worst fears.  We talk about the few we know.  But very few of us know how many have actually died in school.  Why?  Well.........

We owe it to our loved ones...those who have died in school to anaphylaxis to remember them.  To burn each of their names into our memories.  So, today, remember, when fighting for change, remember these names.  (We have also included a slideshow that we created just for our friends and family of some of the school/non-school anaphylaxis losses experienced).

"Breathe. Listen for my footfall in your heart. I am not gone but merely walk within you."
- Nicholas Evans 

Oregon AAA Alliance Needs Your Help!

The Oregon AAA Alliance Family is working on an exciting project and needs your help!  We are looking at experiences of food allergic students in schools! We want to hear from all parents (public, private, and home school!).  Take this short survey and share! https://www.surveymonkey.com/s/foodallergyexperienceinschool

Chocolate, Chocolate, and more Chocolate!

Normally, we here at Oregon AAA Alliance are not going to be big on promoting one company over another.  That being said, every once and a while, an AMAZING product comes along, and we are just TOO excited to not say something!

That moment came today!

TWO WORDS FOLKS...PREMIUM CHOCLATIERS!

We first heard about their Mini PeaNot Cups.  Since my kiddo was diagnosed with a peanut allergy, I have been jonesing for a Reces Peanut Butter Cup like no one's business.  But, I lived with it. Because compared to my daughter having an allergic reaction.  And then I heard about Premium Choclatiers.  Originally, I was tempted to buy my entire paycheck's worth, but I remembered that some brands promise to "taste like the original" and end up tasting like cardboard.  So, I bought one and patiently awaited.  HEAVEN!!! I won't tell you how quickly I ate that, but we will just say it did not last as long as it should have!

After that, I looked at their other products.  I was drawn to the No Whey and No No's.  Again, hesitant, I went with just one package of each.  Got them yesterday, and WOW!

So, here is my specific reviews of each:

Mini PeaNot:
-Tastes Like The Real Thing
-Use of Wow Butter gives great texture
-Treatment of Chocolate makes it SUPER close to Reces

No Whey:
-OMG...this totally tastes like Snickers!
-Carmel is Delish...gooey, good flavor
-Nougat is perfect

No No's:
-Cannot compare this to another candy (in flavor) but they are great.  They get the 6 year old allergic girls seal of approval
-Look similar to M&M's for cake decorating, etc.

Now, I know that some folks will complain about the price.  Folks, You get what you you pay for.  For a couple more bucks, I am THRILLED to put out the money to get something I have not had in forever (after all, haven't we all been eating the same stinking 3 pieces of candy forever)!

They label their candy as Gluten Free, Dairy Free, Egg Free, and Nut Free.  My understanding is that they do still contain Corn and Soy.

I have an email out to Premium Choclatiers.  If I hear anything, I will update you.  You can check out their info yourself here!

An Amazing #TealTakeover week!

Now that Food Allergy Week has passed (and we can all return to our normal, slightly less teal lives), I wanted to take a few moments to reflect on the lessons that Food Allergy Awareness Week (and the accompanying #TealTakeover) have taught me!

1.When we hear about all of the ugliness in the world (parents protesting nut bans, tantrums over nut free celebrations, etc.), it can be easy to convince ourselves that this is reality.  Not everyone is difficult.  Most folks want to keep our children safe.  And if they don't, it is normally because they don't get them.  If you are running into resistance, tell them if you saw their kid dart into traffic, you would run out to save them.  You are just asking for the same.  We saw teal come from some very amazing places!


                        
 
 
 

 

2. There are a TON of super fun ways to celebrate without food!  On 05/13/2014, we dubbed the day "Teal Tuesday".  It just so happened to coincide with school awareness day.  We had a blast! Mary rode a fire truck to school (and got to chat it up with some super fun fire fighters who looked over her Medic Alert bracelet (and gave mom the thumbs up), shared teal glow bracelets, Be a P.A.L. pencils, stickers, and more!  And she (as well as other not-so vocal kiddos with food allergies) got to see their school support them in a very public way!

                                  

3. Most importantly, when we partner together, we can make a difference.  This week was amazing.  I felt for the first time that my daughter and I were working together for change...for knowledge!

We're Leaving on a Jet Plane, or a Cruise Ship, Train or Road Trip

Your hitting the open road, going on an adventure, blazing a trail and your doing it with food allergies!   Good for you, go on and have a wonderful time!  I bet your thinking, this lady is crazy! We're not leaving the house, I don't even feel safe taking my child to my In Laws house.   It might be a little crazy, but at our house we have wanderlust and no peanut, tree nut or other allergen is going to stop us.

One things for sure, food allergies should not stop you from exploring this beautiful world we live in.  Many food allergy families safely travel every day, even internationally.  It just takes a little bit more planning but the pay off is so worth it, it means you can relax and enjoy your vacation with your family.

We'll tackle all kinds of travel, from hotel rooms to camp grounds, first class to the back seat.   There will be helpful tips, safe places to visit and game plans for how to safely eat when your not at home.  We'll talk quick, easy and inexpensive ways to cover your bases and make you feel even more comfortable as your journey ensues.

A popular way for food allergy families to venture out into the world is a "Staycation", close to home, near the places your used to and feel the most comfortable.  This is a great option for a quick get away or to ease your family into the way idea of travel and vacations.   It can be a short camping trip or a few nights at a hotel.  You'll want to plan ahead, call the camp ground manager and ask about how they clean up after guests leave, let them know you have a food allergy kiddos so they understand why your asking.  I recommend not going way into the back wilderness, you won't feel safe in the event of an emergency.  If your staying in a hotel, call ahead and talk to the manager.  They can have housekeeping do a more thorough cleaning of your room.  I've heard of many people bringing their own sheets, I can assure you that in ten years of travel I have never packed a sheet set and I've never come across a stray peanut.   Search out restaurants and call ahead of time to ask about their food allergy practices.  Here on the Oregon coast we have a popular sea food place, there are a number of them along the coast line.  Two of them use peanut oil.  The others don't. 

Taking a plane can require a little more work.  You'll want to talk to the manager or disabilities specialist when you make your reservations.   Alert them to your child's allergy and find out what their specific policy is.  Many airlines will easily not serve or sell peanut products on your flight, they cannot force other passengers to not eat peanut products, you should know that your flight will not be guaranteed peanut free.   The airline might also ask you to call 48 hours before your flight to remind them of your requests.  Do it!  When you get to the airport tell the person checking you in, the person working the ticket counter and the person at the boarding gate.  Tell everyone.  But do it nicely, really nicely.  These folks are helping to keep your child safe.    You will be allowed to pre board; use this time to wipe down your seats and tables, the pockets should be off limits to your kiddo, introduce yourself and your food allergic child to the flight crew, it will make it easier for them to protect your child if they know who it is.    They will also make an announcement that there is a person onboard with a severe food allergy and they will ask that other passengers refrain from eating peanut snacks.
*the first flight of the day is probably the cleanest
*pack safe foods for your family, no liquids though, plan on purchasing them at the airport
*some bring a crib sheet to cover their child's seat, I never have, we've always been fine
*pack safe snacks to give to passengers around you that might have purchased a peanut treat
*introduce your child to the people around you, it may make them more sympathetic and more willing to not consume peanuts
*bring Clorox wipes, they're good for cleaning just about anything
*put for food allergy child in the center or window seat to avoid contact with those walking down the isles
*don't take the free pretzels or snack mix, even if it's peanut free it's probably cross contaminated
*pack extra epinephrine, a plane will land for an emergency, but you need enough to keep your kiddo alive until it can land safely.  We pack 6 to 8 sets of epi-pens or auvi-q. 
When your plane lands, thank the people that kept your family safe.  Thank your neighbors, thank your flight crew and hit the internet to thank them again! It will not only feel good, but it will encourage the same thoughtful behavior for the next food allergy family that flies with them.

Trains are very much like airplanes, you'll have a lot of control and more space.  You can bring small lunch bag type coolers which make carrying foods easier.   Often trains aren't full, so your family may be able to have a rather large section all to yourselves.    But again, you will want to talk to the manager when booking your tickets to alert them to your food allergy.

Cruise ships can seem like a food allergy family's nightmare, but you can safely go on cruises and have a wonderful time.  Cruise ships have service in the dining room for all three meals, take advantage of it.  You'll likely have the same wait staff for lunch and dinner the entire cruise, these people will take good care of your family, they will know your food allergies and alert you to what choices are safe.  Tip them well at the end of the cruise.  Breakfast is the one meal where you will probably have a different wait staff team, talk to the maître d'.  They will also be amazing in helping to keep your family safe.  These people are very well trained in customer service, it is their life to help you.  Avoid the buffets, no matter how tempting.  There are plenty of food options on a cruise ship, you don't need to stand in line with the hungry masses.  There is also a Doctor on board, you can arrange to meet them before your ship even leaves port.  Cruise ships have air vac facilities, so you can always get off of a plane in a medical emergency.    The kids clubs are safe, but I wouldn't leave my kiddos during meal time.  No matter how trained those folks are, you want to be in control of meals.   Going off shore for excursions is a great way to get a taste of foreign countries, without spending a lot of time there.  You can always go back to the ship for meals if you don't feel comfortable eating in the places your visiting.

Some very safe places for families to travel in the US are any Disney park or property, Sea World, Lego Land, most large amusement parks and recreation areas.   Outside of the US, many all inclusive resorts are becoming allergy friendly.  Europe is very similar to the US in terms of allergy awareness.

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