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.

If your wanting to make chef cards in English or any other language buy some printable business cards,

Surviving School with Food Allergies

Did you know that most of our kids have experienced bullying due to their food allergies? According to ACAAI, "an astonishing 79 percent of food allergic children say they are bullied because of their food allergy. And 57 percent report being touched or harassed by a food allergen, such as peanuts, dairy and eggs." (you can read more here).

Bullying can impact our kids in a lot of ways.  As many of us know, many of our kids will find ways to get out of the class.  Whether it is somatic complaints to get to the nurses office (either made up or real based on stress), missing school all together, or poor academic performance, it takes it's toll. Kids who are bullied are more likely to have physical complaints, depression and anxiety (as well as associated symptoms), and have lower GPA's and test scores (read more about bullying here).  Additionally, recent research suggests that the impact of being bullied can carry into middle adulthood.

So what can we do? Stand up! See a commercial making fun of allergies? Change the channel and have a conversation about it.  Talk about bullying behavior.  Encourage kids to tell an adult if they see someone being bullied (or are being bullied).  And check out this video!

Oral Immunotherapy or OIT

1. Oral immunotherapy is a method of inducing your immune system to tolerate a food that it is currently over-reacting to. It involves re-introducing the allergenic food to your system in gradually increasing amounts, with the goal of allowing you to eventually consume the food without experiencing a reaction.

I need to start by saying in no uncertain terms should you do this on your own, without the strict  supervision of a Board Certified Allergist. 

When our allergist first broached me with the idea of OIT as a solution for my daughters very severe, life threatening food allergy 5 years ago, I was totally on board.  Unfortunately for me, my then 4 year old and my Husband we're totally not on board, they were so far from on board they weren't even near the station.   I was frustrated and fearful as she was just about to start school and OIT seemed the obvious choice.  We had done a good job of avoidance since her first reaction at just over a year old.  She had, had only one other reaction.  A contact reaction that went into full anaphylaxis when another preschooler kissed her and had peanut butter on her face.   So convincing them that eating peanuts was the right choice, wasn't happening.

It wasn't until a very scary reaction and hospitalization, when she was seven, that both my Husband and daughter started to consider OIT as an option.  It took almost two more years, until they both were fully on board and we finally started desensitization with our allergist, Dr. J. Baker.   We started on July 1, 2013, full of nerves and anxiety we climbed the stairs to Dr. B's practice...I was terrified and fighting the urge to cry and run screaming from the building.  Was I really going to allow our very trusted allergist to feed my child the one thing that could kill her?! 

Turns out, I was willing to.  That day was bright and sunny; hot really.  We had bags of stuff; a laptop, ipad, books, coloring books, DSi (that I bought to bribe her to be on board), snacks, drinks, lunches, gifts (in case I needed to do more bribing) and lots of sets of epi pens (you don't need to do this, your allergist office is fully stocked with epinephrine).    Most allergist have cozy rooms, TV's and dvd players, video games and books.  You don't have to pack like your moving in, I promise.

They started the appointment by taking her vitals, that totally freaked me out.  Would this be the last time someone took her blood pressure?  Her temperature?  Your mind goes there, it's really a strange dichotomy of emotions and thoughts.  

Then they brought in the first tiny syringe, full of cran-grape juice and .025 micrograms of peanut flour.  An amount of dust so small you'd not be able to notice it on a table.   And with no real fan fare, it was stuck in her mouth and she was swallowing what was a poison to her body.   Then nothing.  Nothing happened.  No hives, no swelling, no vomiting, no dropping blood pressure.  Nothing.  

Fifteen minutes later, they brought her another dose, just a tiny bit more peanut flour this time...and still nothing.   By the third "up dose" her throat was tickly, but we pushed through as that was a natural reaction, expected when her allergen hits there first.   By the 5th up dose, she had a tummy ache and we stopped.  Our nurse mixed me a container of juice and peanut flour that I would give my daughter two times a day, every day until our next appointment.   

The fear naturally moved on to the first dose at home, which also happened with zero issues.  So boring! All that anxiety and fear, for nada!   We were on our way.

The appointments marched on, by August she was eating little pieces of peanut; the size of tiny baby teeth).  We had a rhythm and we continued on, even taking vacations to Seattle and camping (don't go camping while doing OIT.  Trust me.).   We had very mild symptoms occasionally.  On one dose she had one hive on her left cheek for 15 minutes after each dose.  Another two brought excess saliva/phlegm which required a little cup to spit in go everywhere with us.  Gross right.  Every dose caused horrible gas.  Oh the smells were awful!  I discovered daily probiotics helped enormously.  

In November Dr. Baker and Marianne said, "Your done.  You've reached the final dose.  Stay on it for three months and come back for the 24 peanut challenge."   What?! Done.  No.  We like the safety of here, the consistency in seeing the two of you weekly.  Were we really done? Just had the challenge to complete and that would be it?  Not possible.  We left with directions to eat 8 peanuts 2 times a day, for three months. 

But alas, in February, weighed down by anxiety far worse then the first appointment we went back to Dr. Baker's office so that Liberty could eat 24 peanuts at once.  This time I was so frightened because that's a lot of peanuts.  A lot of what could kill her all at once.  Funny, that worry hadn't gone away.  We'd been long cleared to eat items with cross contamination.  Cleared to have peanuts back in the house again...but 24 peanuts.  Oh, the fear.   

It took her 34 minutes to choke down all 24 peanuts.  She hates the taste of peanuts.  And then nothing.  Nothing but celebrating! 

We graduated from OIT in February.  Now we eat a daily maintenance dose of 8 peanuts a day, and that keeps Liberty safe from accidentally ingesting peanuts. 

OIT might not be for every family, but it was absolutely the most amazing thing for my family.  In just this weekend we went out to dinner and had a brownie ice cream sundae (IN A RESTAURANT) and we ate at a huge buffet and I didn't even pay attention to what Liberty was eating!  She just ate what she wanted.    We're hoping to go to Africa in a year, and we've flown and I didn't say a word to anyone about her peanut allergy.   We go safely everywhere, I never even think "what if" any longer.  My daughter says it best, "We're free!"

We still carry an epinephrine injector with us always.  OIT is a treatment not a cure.
 

Living With Food Allergies

We can probably all recall the day we learned that our little ones had food allergies.  The fear, panic, resentfulness and anger...the stubborn defiance that food couldn't, wouldn't control our lives.  Until you arrived home and realized you had a pantry full of peanut products and reading labels would now make shopping trips last for days and the grocery store would be crawling with germs and probably shopping carts covered, dripping in peanut butter.  And then you decided that you just wouldn't ever leave the house.  You would make everything from scratch, you would learn to sew, you would home school, your house would become the only safe place for your child to exist...

Sounds to me like a prison.  We get one life.  You should be living it.  Living it with food allergies.  When you had that precious baby you imagined all the things that child would do; go to school, go on dates, go to college, get married...maybe in between they would play sports, Easter egg hunt, trick or treat.    Food allergy fear lies to us though, it tells us they cannot do any of those things because a peanut will sneak out and grab them, it will kill them.

In ten years of LIVING with food allergies we have traveled, eaten out, played soccer, soft ball, tennis, we have hunted eggs and spooked neighbors, we have gone to school and home schooled, we have  been in 7 dance recitals and that many week long rehearsals and we have done so safely.  You can too, it just takes planning, precaution and education.

First, a dose of reality.  Peanuts (or any other allergen) could be present.  But they probably aren't, and even if they are they probably won't hurt your child.   Obviously, there will be peanut products at the grocery store.  Wipe down the cart, and avoid the bulk section (nothing there is safe anyway!), walk down the peanut butter isle to show your child it isn't scary and it won't hurt them (everything there is sealed).   Go to the park and play!  Run around, use the swings, swirl till you think you might throw up.  Wash their hands before snacking. 

Do the Easter Egg Hunt, participate in the Valentine Exchange and go Trick or Treating.  Your little one won't mind trading for safe filled eggs or safe Halloween Candy and your older child will love getting to pick out their traded for treats!   For Easter, consider hosting a hunt, then set the rules! No food or only safe candies are both perfectly fine...and kids will love the thrill of the hunt regardless!  For Valentines Day use the www.snacksafely.com list to provide loads of choices for treats to share in the classroom.   On Halloween consider having two of the exact same trick or treat bags, when your kiddo gets home swap immediately for the safe bag (this is a big one for younger kiddos or those with special needs), keep a couple safe treats in your pocket in case the urge to sample hits.  Put all the unsafe candy in a box and ship it overseas to our Service Men and Women.   Teach your child to not touch unsafe candy and to politely decline if needed. Or if you'll only be in your neighborhood deliver a safe treat to your neighbors houses prior to the big day, with a note describing your kiddos costume and ask for their help! Your educating again! We have safely enjoyed these activities for years, your kiddos will be having a "normal" experience and will be LOVING life!

Sign them up for clubs, sports teams and dance.  Talk to the coach or teacher, educate them about your child's food allergy.  Ask that they either forgo snacks or pick snacks from a safe list you provide.  Pack your own safe snacks just in case a parent forgets or just disregards.  If you overhear a parent saying something unkind, resist the urge to kick them, instead offer some gentle education.   

Go out to eat! You deserve a break from the kitchen every now and again.  There are lots of safe chains, but you might also have a neighborhood place that you'd love to try.  Call ahead and talk to the manager or chef, get a feel for their knowledge and willingness to provide a safe experience.  Avoid Chinese, Thai, African and Mexican (mole sauces have peanuts often), but there are safe exceptions for Chinese and Mexican, PF Changs has a great allergy menu and Q'doba uses no nuts.  Bakeries are a general no go unless you can find a peanut free one.  

Travel.  If at first all you do is drive two hours away, that's okay.  Your getting out of your comfort zone.  Your going to be cautious, prepared and confident.  Call the hotel and talk to them about housekeeping really deep cleaning your room, see if they have a mini fridge you might use.  Pack safe snacks and treats.  Call restaurants in the area your visiting so you have a safe game plan for feeding your family.  If your unsure about an attraction you may visit, call them too!  Every time you call, you educate.  I also will check out the medical facilities, it's natural to want to know where you'd be going in case of an emergency (the emergency could be a broken arm!).   It will also empower you to feel good about this vacation, you'll be able to relax and enjoy. 
If your needing to fly, do it! You can do it safely, you just take the same steps in protection.  Call the airline ahead of time (Alaska, Jet Blue, Southwest, and Delta all have good allergy policy) to alert them to your child's allergy.  Carry extra epinephrine in case of emergency, and safe snacks for the flight.  Pre board, wipe down your seats and tables, introduce your family to the flight crew, thank them A LOT.  When your neighboring passengers board, introduce your kiddo to them (educate) and offer them safe snacks if they happened to buy peanut products prior to boarding.

If you want to home school, do it.  If you don't want to, that's just fine too.  Food allergy kids have a protected and legal right to attend public school.   Many families choose to write a 504 to detail the type of accommodations their child will need during the school day to keep them safe.  Most schools will not go peanut free and frankly, that may not keep your child safer.  Peanut free schools might make other families resentful and could make teachers complacent.  More commonly classrooms will be allergen free, and hand washing after food will be mandated.  Also, you might ask for food free celebrations or again that food for celebrations come from a safe list you provide.   Your teacher should be able to alert you to upcoming crafts that might use food or potting soil, and classroom celebrations.  Consider offering to be the class mom, you'll have total control!  

Maybe the most important thing to remember is that you are setting the tone and example for your child and how they view their food allergies.  If food allergies are just a part of them, like blond hair and blue eyes and not what defines them, their life will be much fuller and so will yours.  You won't just be surviving food allergies you will be thriving with food allergies!

Cherish your yesterdays, dream your tomorrows and live your todays. ~ Anonymous

Happy Mother's Day!

As both of us here at Oregon AAA Alliance are mothers, we would like to be the first to reach out and wish you a Happy Mother's Day!  

We also wanted to talk about a subject near to our heart...how we as Moms are impacted by managing our kiddos, and what we can do about it.  It is probably no big secret (or surprise) that mothers of children with food allergies experience higher rates of anxiety. While many studies have looked at this, most of these have not been compared to non-food allergic mothers.  A recent study, however, compared mothers of food allergic children, asthmatic children, and children without chronic illness on measures of anxiety.  Mothers of children with food allergies consistently scored higher than both mothers of asthmatic children and mothers of children with no chronic conditions.

Each and every one of us knows first hand how real that study is.  Raising a kiddo with food allergies is difficult.  Managing doctors appointments, medications, and school is not easy.  Add to that the stress that we face when we have to face a world that our kids must navigate (despite many of the people they work with not fully grasping the nature of their allergy). The stress takes it toll!

That being said, we have to find a way to take care of ourselves.  Think back to the last time you were on a plane.  Remember when they told you to put on your own oxygen first? Remember why? It is because if you don't take care of yourself, you are useless to the people around you (for more on burnout, check out this awesome resource).

So, how do you manage it? Here are our favorite tips:

-Go for a walk

-Try Yoga/Meditation

-Get a massage (Money tight? Check out your local massage school!)

-Adopt a regular exercise routine

-Watch a funny movie

Tell us how you escape from your stress!

Food Allergy Awareness Week 2014!

It is May, which means that Food Allergy Awareness Week is upon us!  While the Oregon AAA Alliance team encourages raising awareness every day, May 11th-17th presents us with a special opportunity to paint the town...well...teal!!!!

So, how can you rock food allergy awareness week? Here are our top tips:

-Proclamations.
It is probably a bit late to request one from your Governor, but depending on the size of your city, you may still be able to secure one from your Mayor.  If not, search for news of your local Government proclamations (your support group leaders should be able to share this with you) and share the info!  And prepare to request a proclamation for next year (most places require at least six weeks notice, you can find more info here).

-Rock the #TealTakeover
FARE is encouraging those who have food allergies or love someone with a food allergy to participate in #TealTakeover.  They have some fantastic lists of ways to rock teal at school, work, and on the college campus (check out their list here, follow them on Twitter  and/or Instagram, and check out their Pinterest board here).

-Talk to Your/Your Child's School about Food Allergy Awareness Week
Food Allergy Awareness Week presents us with an awesome opportunity to talk about life threatening food allergies in our schools.  There are a lot of ways schools can raise awareness.  Schools can hold assemblies, incorporate food allergy awareness into lesson plans, use FARE's Be A P.A.L. program, or you could donate a book on food allergies (check out this list of great books).

-Share this amazing infographic from FARE to spread knowledge about food allergies!

-Share Our Blog!!!!!!


Tell us how you are participating in Food Allergy Awareness Week!

Food Allergy 101

Alright...so you just got home from the allergist.  I am sure your doctor told you to stay away from the Internet (and you didn't).  That is okay.  We are going to give you our top five musts for surviving the first few months of an allergy diagnosis.

1.Cry in the shower.  Go ahead.  You deserve it.  Life just changed drastically, and it may or may not have done so traumatically.  Give yourself a chance to get it out.

2. Clean out the cupboards.  Anything that contains the allergenic food goes.  It will save your sanity and create a safe space for your loved one.

3. Pick up your EpiPen.  You will want at least 2 sets.  They are expensive...and no one ever tells you about the coupons.  Here is the link.

4.Prepare for shopping to take a bit longer.  And involve tears.  The Snack Safely List Rocks.  Shop the outside of your grocery store...you are less likely to run into problematic foods out there.

5.Remember that you are LIVING with food allergies.  Don't barricade yourself in.  The temptation is there.  Bring lots of wet ones wipes, pick areas that don't have lots of food to build your confidence, and get out there! And know we are here for you!

What Accommodations Should I Be Asking For?

I will start by saying that this is a conversation you should have with your allergist.  Only you, your kiddo, and your allergist can establish risks and parameters that you are all comfortable with.  That being said, here are some commonly requested accommodations:

-Allergen free classroom (talk with your allergist about whether this needs to be simply free of the allergen or free of food that contains/may contain/is manufactured with)

-Allergen Free Tables (with or without buffer zones)

-Hand washing before and after meal and snack periods

-Medications (lots of options): Self-carry/Self-Administer, Self-carry/Teacher-Administer, Teacher-Carry/Teacher-Administer

-Separate supplies to reduce cross contamination

-Food Free Celebrations

-Epinephrine delegated staff (janitors, bus drivers, EA's, cafeteria aides, recess monitors, etc.)

-Signage indicate "Allergen Free Zones"

Tell us what accommodations you have!

But My School Says They Don't 'DO' 504's?!?!

If I had a dollar for every time I heard some one state "But my school says they don't do 504's for food allergies.  They are great at taking care of kiddos so they don't need anything but an IHCP (Individual Health Care Plan)", I would be living somewhere VERY warm right now!

Let's begin by talking about what a 504 is.  A "504" is a plan that references Section 504 of the Rehabilitation Act of 1973.  Under this act, "qualified handicapped" (yes, the term is a little dated) individuals are entitled to accommodations under the act.  In terms of food allergies, for a long time, schools would (successfully) argue that things that mitigated the allergy allowed them to not develop a plan.  However, the under the Amendments Act of 2008, those evaluating cannot look at mitigating measures when determining eligibility (for greater detail on this, check question 13 on the OCR's page discussing this.

Now that we understand 504 just a bit better, we can return to the original question about schools that "don't do 504's".  All schools have an obligation to identify and evaluate student's with disabilities (this is referred to as Child Find).  If your school is saying this in the course of conversation, my best suggestion would be to send a written request (either email or certified mail) requesting a 504 evaluation on the basis of life threatening food allergies.  Do not talk about accommodations...only evaluation.  If they using this as the grounds for denial, then you can pursue the remedies available to you as outlined in your procedural safeguard manual (sorry...since we are not attorneys, they won't let us say much more than that!).

Just remember...any school willing to accommodate should be willing to write it down.

All of this said, if you walk into a school and get the impression that there is nothing you can do to convince them to keep your kid safe, you need decide if this is the right choice for you.  You can file complaints, lawsuits, and bury them in paperwork until the cows come home, but you will never be able to force compassion.  At the end of the day, you know your kiddo and what they need...go with your gut!

Preparing for Kindergarten

For most parents, the first day of Kindergarten is filled with emotion and apprehension.  Their baby is growing up.  Have they prepared them well enough?  Will they make friends?  So many concerns.

For those of us who have children with allergies, asthma, and anaphylaxis, the first day of kindergarten is totally different.  If we are honest, if they rode the bus, half of us drove behind, terrified.  We watched our cell phone/office phone religiously. Our thoughts were not on social adjustment and the like.  We were wondering if the teacher would remember and respect the allergen free hand accommodation.  If they would enforce the allergen free classroom.  If someone would touch our child after having a peanut butter sandwich.  If we are honest with ourselves, that first day, and for the rest of their life, we send our child to school each day wondering if they will come back to us.

So, what is the best way to prepare for kindergarten? Here are our tips:

1. Start early...like before kindergarten roundup.  Early spring is best.  This is not the time to talk about accommodations.  This is investigatory time.  Talk to the teachers.  The cook.  The janitor.  The EA's.  All of the behind the scenes folks, because they will be the ones taking care of your kiddo.  And THEN talk to the principal.  Ask him/her what they feel their role is when it comes to managing a kiddo with a food allergy.

2. When kindergarten roundup starts (and you have your school picked) send a letter requesting an evaluation for a 504.  I PROMISE you won't regret it.  Any school willing to accommodate should be willing to write it down.  504's have procedural safeguards, IHCP's do not.  You can always choose to end the 504...but it is easier to go that direction than the other. DO NOT DISCUSS ACCOMMODATIONS at this point.  Only request an evaluation for your child based on life threatening food allergies.

3. In the weeks headed up to school, you will have your 504 meeting.  Your kiddo may either be determined able to self-carry epinephrine or not.  If not, you CAN request a teacher carry it.  IT SHOULD NEVER REMAIN IN THE NURSES OFFICE! When minutes count, you want the Epi with your kiddo.  You will also be talking about what other accommodations may be needed.

4.  Start talking to your kid (more) about not sharing food, washing hands, how to recognize and report symptoms to adults, etc.

5. If your kiddo is self-carrying,  get a self carrier.  If teacher is carrying, get something similar.  With our daughter, they carry a lot (and I mean a lot).  We got a messenger style bag that carries her EpiPen Jr., Inhaler, Spacer, Wet Ones wipes, an Child CPR mask (worst case scenario), a pulsoximeter, and a thermometer.

6. When the big day arrives, be brave in front of your kiddo.  They are likely just as scared as you.  We have to do everything in our power to keep life as normal as possible for them.  Sometimes that means telling them they will be fine and then crying in the car.

7  .Enjoy the year.  There will be mistakes.  Deal with them as they come.  Some will be minor, some, not so much.  Try to pick one thing you can "not complain about" so that you are not the parent that does nothing but complain about the school.  Let me first say that I am not saying let them off the hook.  Let me give you an example: My daughter's school has been nothing but one battle after another.  I swear, sometimes I no more than get one issue resolved before we are on to the next.  All allergy/asthma related.  I also don't particularly care for their teaching style.  Guess what...I shut my mouth about the teaching style.  Why? She is making good academic progress, and I AM NOT A TEACHER.  I need to not be fighting about EVERYTHING!

Good luck!

What Causes Food Allergies?

We wanted to take a second to share some of the good info from UNC about Facts about Food Allergies!

• There is some thought that our environment might be too clean, causing our body to respond to "normal/safe" substances.
• There are no good studies showing mom's diet during pregnancy and it's impact on food allergies.
• There is no "right" way to introduce allergenic foods.  The community remains divided about this.

To read more about the great work being done to uncover possible causes of food allergies, head on over to UNC's page!

Surviving the summer months with Allergies, Asthma, and Anaphylaxis!

When it comes to summer, as parents, we already have a lengthy checklist.  Did we remember the sunblock? Toys? If you have kids with motion sickness (like I do) extra blankets/buckets/towels/wipes/changes of clothes? Diapers and wipes (for those with babies)? Special toys and blankets? Tablets? IPods/IPads/Tablets?  By the time the car is packed, it can look like you are moving out (especially if you are a family of six, like us.

For those of us with children with food allergies/asthma/anaphylaxis, preparing for the summer weather takes some extra planning.  Do we have enough EpiPen's/EpiPen Jr.'s/Auvi-Q's?  Inhalers? Benadryl/other antihistamine? Any other meds/equipment?  If you are like me, it takes longer to pack for the coast than drive to it!

So, with all of that being said, what can we do to ensure that we keep our supplies stable in hot weather?  First and foremost, NEVER leave an EpiPen in a car.  There are two reasons for this.  First...it does you no good there.  Second, Mylan recommends keeping your EpiPen at 77 degrees (or between 59-86 degrees).  Auvi-Q has the same recommendations.

In terms of asthma medications, while all companies advise specific temperature parameters, a study found that exceeding these parameters had no impact on the efficacy of the drug.

Apart from medicine, the other thing we often have to consider is food.  Ice cream and similar treats are a frequent go to during the hot days of summer, but pose a huge risk for kids with food allergies.  We recommend sticking to the Snack Safely list to refer to safe treats during the summer.  And of course, read labels for sun block and drink up! Kiddos with asthma (who are breathing more rapidly) are going to be at higher risk for dehydration!