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!