Changes - the beginning of our school year

Callan was so excited to start Spanish Dual
Immersion Kindergarten.  He even said, "Adios"
to me when it was time to say goodbye.

The first weeks of school have come and gone for my kids.  I knew this would be a transition year with my 5-year-old starting Kindergarten.  However I still seemed to underestimate the stress and worry of preparing my kids for their new year.

School kids, allergies or not, will face some new circumstances with each new year.  The days leading up to the first day of school can definitely be anxious times for kids and their parents: Who will my teacher be?  Will I have friends in my class?  Will there be more homework this year?  Will everything be harder than last year?

When your child happens to have a life-threatening or lifestyle-changing condition like food allergies, the anxiety is amplified exponentially.  The questions above are still relevant but there are even more concerns:  How will my new friend react when he learns I can't sit near him because of this peanut butter?  Will my classmates wash their hands after lunch?  What if someone brings cupcakes to school?  What if I have a reaction at school?  Will my teachers know when I'm having a reaction?

As I always do before a new school year begins, I met with my kids' classroom teachers and the school nurse to review the kids' food allergy action plans (check out the most updated emergency care plan here).  This is a really important step to do every year.  Even if your kids will have the same teacher, same principal and staff, and same afterschool provider, it's critical to remind about your kids' allergies, possible symptoms, careful practices, and procedures during an anaphylactic reaction.  Teachers and staff take care of dozens, hundreds of kids each year.  They care about kids and want the school year to go safe and smooth for everyone.  They will appreciate the reminder that your child has some important, health needs and the review of emergency care procedures.

The recent tragic death of 13-year-old Natalie Giorgi prompted me to change a lot of ways in which I prepared our kids' school for possible allergic reactions.

1.  We revised our food allergy action plans.
Where once I had approved of Benadryl for reactions such as skin rashes, itchy nose and eyes, and sneezing, I have now changed the course of treatment to epinephrine for any symptoms beyond rash at the point of skin contact (nothing in or around the mouth) and any known bite or ingestion of an allergen even if a reaction does not develop.

My kids' classroom teachers now have but one course of action: an epinephrine injection.  This takes the responsibility away from teachers to make a judgment call on how severe an allergic reaction is.  Whatever the reaction, teachers should feel empowered to administer a dose of epinephrine, call 9-1-1, and then let medical professionals determine the nature of the reaction.  Receiving epinephrine when one doesn't really need it has minimal side effects: increased heart rate, jittery/restless behavior.  However, not receiving epinephrine when it is necessary can result in injury or death.  In fact, research points to the under-use or late administration of life-saving epinephrine as a prime factor in why individuals do not survive anaphylactic reactions.

Note: there is now an easier-to-read, picture-assisted food allergy & anaphylaxis emergency care plan.  If you have not created a plan with your child's doctor, definitely use the new form.

Ryken hardly notices the extra weight from wearing
his medication. I however notice the difference in
my lighter purse!

2.  My 8-year-old now self-carries his epinephrine injectors.  
In the past, I had been hesitant about having Ryken carry his own medication.  I feared he wasn't ready: that (1) he might lose them,  (2) he might somehow break them, or (3) the injectors might become toys and get accidentally administered in the hijinks among friends.

We have had open, honest conversations with Ryken about the dangers of food allergies since he was a toddler.  Granted, the exact words have changed over time -- at 2 we explained that milk and nut products would make him very, very sick and might have to get a shot and go to the hospital; at 8, we discuss with him the details about tragic deaths related to food allergies such as Natalie Giorgi, who died from accidentally biting into a dessert with peanuts.  I do not believe in shielding my kids from the idea that they could die from a small mistake.  Death is scary but it is a real possibility.  In contrast, I believe that the more my kids are aware and educated  -- much like spreading awareness in their school and friend communities -- the more empowered and vigilant they will be to make safe choices when they are not in my immediate care.

This upfront, continuous dialogue has helped Ryken understand and remember to label-read and hand-wash, avoid sharing foods and take precaution in situations where cross contamination might occur.  He is ready for the responsibility and very much wanting to carry it himself.   He does not fear having the medication on him anymore but, instead, sees the importance of having it as close to him as possible.  We have had good talks about his past symptoms.  I've had him reflect on past reactions and recall memories of when he *knew* -- when an alarm went off in his head -- that told him he was having an allergic reaction.

So we filled out the required paperwork with doctor and school nurse that authorizes Ryken to self-carry his Auvi-Q twin set.  Like a champ, he remembers to strap on his waist pack every morning of school.  He chose bright red because he wants it easy to identify for anyone who might need to assist him in case of an emergency.  To prevent from losing the pack, we designated one place (Ryken's backpack) where it will always be kept when Ryken isn't wearing it.  So far, Ryken has worn it even on the days when I have forgotten to remind him!

3.  We have switched to Auvi-Q as our epinephrine injectors.  
Earlier his year Auvi-Q entered the epinephrine auto-injector market that was previously dominated by the EpiPen.  My family had a chance to check out Sarah's set, practice with the trainer, and talk to Sarah's son Tristan who has had to have the Auvi-Q this summer and most recently and unfortunately at school for food-related allergic reactions.

The Auvi-Q's most unique feature are the audio commands that walk you through the process of administering the injection.  Seriously, it's a brilliant feature that will enable anyone who understands English to use it.

We also liked the Auvi-Q's compact size and simple design.  It is smaller than the EpiPen, doesn't appear as frightening to those fearing needles, and there's no mistaking where the needle will come out for the injection.  Because it isn't as long as the EpiPen, it was easier for my kids to grip with stability.  They quickly became experts at using the trainer.

Third, Tristan's positive experiences with the Auvi-Q convinced us this was a drug worth trying.  Tristan didn't feel any pain from receiving the shot -- he went so far as to insist that there was no shot, no needle.   He has had the Auvi-Q on 4 occasions and has not complained about the pain.  On his 4th time having the Auvi-Q, he administered the injection himself.  Sarah believes that Tristan was able to do this because his past Auvi-Q shots did not hurt, so he wasn't scared at all.

I have trained teachers and coaches on both the EpiPen and Auvi-Q and, I have to say, I see their relief in hearing the device instructing them and how easy it is to hold and press to activate the injection.  Overall, I think the ease of administering the Auvi-Q will keep my kids safer.

If you have not checked out Auvi-Q, talk to your allergist or pediatrician about it.  (Your allergist may have a trainer that you can check out!)  I recommend calling your insurance company to see if it is a covered medication.

4. We have sets of epinephrine in more places at school.
In the beginning of the year, I met with the school nurse who splits her time between three school sites within the district.  I appreciate her understanding of food allergies, her support of self-carrying and the Auvi-Q, but the thing is she is only at our school site two days a week.  California districts have really axed school nurse hours -- Sarah's kids do not have any school nurses on campus ever in her entire district!  It's really awful policy that California schools have had to deal with for many years now.

Anyway, without a main person with expertise on food allergies at the school site full-time, I decided to use Auvi-Q's $0 Co-Pay coupon to get sets of medication that follow the kids wherever they are at school.  So there are sets for each of my kids in the main office; sets in their classroom; one set that Ryken wears; and one set that the Kindergarten lunch/yard duty teacher always carries with her.  Having access to medication at all times makes me feel much better.   My kids will be exposed to the most food at recess and lunch.  And the yard/lunch staff have to watch so many kids that they might not be able to step away immediately to retrieve emergency medications from the office.

I am so grateful for the growing competition between EpiPen and Auvi-Q.  To bolster their fanbase, the makers of both EpiPen and Auvi-Q have special offers running until the end of 2013 that potentially reduce your co-pay for their injectors down to $0.  (This depends on your insurance.)  Regardless of which medication you prefer, do check out the coupons.  You might be able to arm your kids' classrooms, lunchrooms, and main offices with more epinephrine injectors at no or minimal cost to you.


What are some changes that you have made in getting ready for the new school year?

Why Do Kids Have to Eat Peanut Butter At School?

Why do kids have to eat peanut butter at school?  This is such a controversial subject in the food allergy world, though I can't for the life of me figure out why it's so heated.  I've read the reactions to food allergy parents who have given their opinions in the past.  I know what peanut butter advocates think.  I know that on the extreme side of this argument, peanut advocates think that severely food allergic children should not even be allowed in school--that they should be homeschooled.  In fact, I've heard this opinion so many times that this type of verbiage no longer fazes me.

How many times have I heard a parent say, "But she'll only eat peanut butter for lunch!"  I just can't figure this out.  Because if my kid looked at me and told me he would only eat one thing for lunch, and that one thing was something that could potentially kill another student, I'd tell him no way.  Forget that, if my kid told me he would eat only one thing for lunch, period, I would tell him no, that's not acceptable.

I just can't wrap my head around parents who insist that peanut butter sandwiches are the end all. Do their kids eat these for breakfast and dinner too?  Do they have a peanut butter sandwich waiting for them when they get home for snack?

Okay okay, I get it, I do.  People have rights.  They want to eat peanuts and they should eat peanuts.  Just not at school.  There are personal rights and then there's social responsibility.  What are we teaching our children if we're only teaching them one side of the coin?

I mean, if my son was playing in the park with friends, found a long sharp stick and proceeded to wave it around recklessly at the other kids, I would tell him to put it down.  Sure, he has the right to play with sticks, just not around other kids.  Hey, it's unlikely that he'll poke someone's eye out, but it's possible.  He could also unnecessarily scratch or puncture someone.  Wouldn't we rather avoid the risk altogether and tell the boy to put the stick down?  Or would we all sit around on the edge of our seats waiting to see what would happen?  If your child was the one with the stick pointed at her, would you just sit around and do nothing so as not to offend the rights of the stick-brandishing child or his parents?

Do we share the responsibility of helping to keep our kids safe?  Every day, my kids go to school and I pray that I don't get a phone call from the school office.  When I see the number flashing on my phone, I'm immediately filled with dread.  I'm hoping the caller is not about to describe an allergic reaction, and that I won't need to rush myself over to the pediatric ER to meet my child.

So why the peanut butter?  Of course, 99.9% of the time, peanut butter sandwiches in the school cafeteria aren't hurting anyone.  It's the less than one percent of the time, the time that after eating a peanut butter sandwich, a classmate accidentally spits into the mouth of a peanut-allergic child during a conversation they are having in line about to leave the cafeteria.

Yep, it happened to my kid, yesterday at school.

Within moments, my son developed a stomach ache, told the principal, and was whisked away to the office.  While I was on the phone with the principal (thank God I answered my cell!), my son reported trouble breathing, so I told him he needed the epinephrine injection, which my son administered himself.  I told the principal that he needed to go directly to the ER, and I would meet him there.

My 9-year-old son is officially a rock star.  He recognized his symptoms, got help, related his symptoms clearly, and administered the Auvi-Q auto-injector successfully and calmly.  He rode an ambulance alone to the ER, readied himself for a four hour stay, and worried that he didn't have his books to do his homework.

Why can't we just say that there are no nuts allowed in school?  Because we know people won't follow the rules?  Because we know people won't like it?  Because we're worried about people's right to eat what they want for lunch?

All schools have drop-off and pick-up procedures which are not to everyone's liking, and which are probably going to be challenged by a few parents, but we still have them.  We have them because we know it's the right thing to do, and because we know if we didn't, we'd have a lot more accidents.  If we could avoid just one accident with rules about how to pick up our children from school, would that help to justify their existence?  Do we even feel the need to quantify how safe we could be with the implementation of a particular rule?

How many food allergy accidents have to happen before we change our food policies at school?

I don't think most people mean to put food allergic children at higher risk of reaction at school; I just think they don't understand.  They haven't had to respond to an emergency situation--adrenaline pumping, hands shaking.  They haven't had to live through the ups and downs of managing food allergies on a daily basis, spend literally thousands of dollars every year on medications, ER visits, and specialty foods...in a constant state of worry.

I've always known that food allergy education is a slow evolution.  One step forward, two steps back.  We had our two steps back yesterday, I'm looking forward to that step forward.

It's A Small World

Tristan had three allergic reactions during our three week summer getaway.  (Don't worry, he was treated and fine each time).  We learned the hard way to look at every label every time and to take the "shared equipment" disclaimers seriously. Very seriously.  Every time.  I must admit we've been loose about the disclaimers in the past.

In our defense, since Tristan just turned nine, we have probably read 14,600 labels = (365 days x 5 labels x 8 years)!  Just for him just to make sure that what we were about to give him wouldn't make him sick.  And that's a conservative estimate, and includes labels for new foods as well as labels for foods we regularly eat.

Happy Birthday to our big guy!

So now that we are being overly cautious about ingredient labels and cross contamination, I feel like our world just got a lot smaller.  Our safe product world, that is.  I never wanted to be the kind of mom to stress and fret every day about how few foods are available to my son, but the fact is, this new development has gotten me to a heightened state of awareness.  Meaning my stress level went through the roof.

There is enough worry associated with the first week of school: new teachers, new kids, new classrooms.  On day 1, Tristan found out that his teacher has a cat.  Tristan is severely allergic to cats.  Oh yeah, and he was sneezing all day with a runny nose, and is now taking a daily antihistamine.  And thus is the life of an allergic child.  But I digress...

What I wanted to say was that my discovery of homemade bread and my mother-in-law's breadmaker actually helped to save my sanity.  Yes, I just said my mother-in-law just made me more sane.

Bread and other bakery items so commonly are made on shared equipment with several ingredients that my son is allergic to (egg, dairy, nuts, etc.), so I decided to try my hand at homemade bread.  We were on vacation and had no machine, but I tried it out and the bread was incredible, hot and fresh.  It was likely the best bread my son has ever tasted, as we are usually forced to buy from a short list of breads that are dairy-free.

The kids loved making the bread.  Definitely a great activity for a rainy day.

I googled "easy vegan bread" and found the recipe for the Easiest Simplest Vegan Bread Ever. Obviously, I made that one, and am officially experiencing a homemade vegan bread obsession. And I must say if you find a breadmaker with a timer feature (which I'm sure they all have by now), there's nothing like the smell of hot bread to wake up three sleepyheads during their first week of school (and one sleepy mommy who hasn't yet had her coffee).

So even though my world got smaller this summer, a few things opened up for our family in our food world.  Managing my children's food allergies has always been a journey--this is just another turn in the road.

First day - a bright new beginning

"I thought this was the year we stopped hovering in the classroom on the first day," says my friend, Sheri, as we follow our now 2nd grade sons into a classroom brimming with students, parents, and little siblings.

I laugh with Sheri in spite of myself.  I am in complete agreement about taking a step back from the last-minute primping and hugs of 1st grade.  Halfway through last year Ryken was already sprinting the last 50 feet to his open classroom and hardly remembering a "Bye, Mommy" before disappearing completely from my view.  My kid has been ready to cut the proverbial cut for quite some time.

My baby is now a 2nd grader.  Excuse me while I regain my composure...

The one thing that keeps me in the class longer this morning is, without a doubt, Ryken's food allergies.  Last year we had the luxury of connecting with Ryken's 1st grade teachers early enough to meet with them before the year began and have agreement on a game plan for how to keep him safe.  With the kids and me out of town until a few days before the new year began, I could only email his dual immersion teachers about his allergies and precautions.  I hadn't discussed Ryken's needs in person. I was able to submit his Food Allergy Action Plan and medication to the school nurse to the school two days before the year began but no luck in talking to the teachers who were busy getting their classrooms ready.  I did talk to one of the administrative assistants who told me she had just printed up new "Peanut-Free" signs for Ryken's classrooms and the designated lunch table.  It was good to know that the greater school community was gearing up for his return.

With a class kit of medication and forms in one hand and wet wipes in another, I walked Ryken into the classroom.  As expected, he excitedly rushed in ahead of me (thank goodness, he LOVES school!) to look for his assigned seat.  When I had finally been able to get a moment in front of the teacher, I quickly introduced myself to Ryken's English teacher and explained Ryken's food allergies as I handed over the stash.  The teacher recognized me immediately and cheerfully told me, "We are going to have kids wash their hands everyday.  We've bought a huge bottle of soap already but unfortunately Mrs. T (the Spanish teacher) wasn't been able to check it yet.  So these <wet wipes> will come in handy today but after today we will be washing!"

I swear, I think I heard music streaming through the windows!

I was really pleased with the immediate recognition and proactive stance on heading off food particles in the classroom, not to mention germs and viruses.  Clearly last year's teachers, this year's teachers, and the school staff were fully aware of Ryken's food allergies and discussed what has worked.  In my letter to Ryken's 2nd grade teachers I wrote about this as a helpful compromise since I understood that my first choice, whole-class hand-washing, would take away from precious instructional time.  I'm so grateful that the 2nd grade team has stepped up the hygiene!  Last year the 1st grade teachers gave out wet wipes after lunch to combat food particles from coming into contact with shared classroom materials. 

Today was only the first of many (180?) days of this school year but it's reassuring to know we are off to the right start.  And we families of food-allergic children could use all the support we can get, right?  I am hopeful that Ryken is in the capable hands of supportive and protective educators.

If your kids with food allergies are back in school, how have the first days been for you? 

Surviving the First Week of School

As summer winds down and we return from our month-long trip, reality starts to set in as I realize the boys start school this week.  Never mind the packed suitcases still lining the hallway, and the chaos that I'd left around the house in piles before we even left for our trip, I'm talking about a real craving for coffee when I even begin to think about a 7:40 am school start time.  Not to mention the panic that sets in when I start gathering all the forms, meds, and everything else I need to alert the boys' teachers of their food allergies, and then realize there's a glitch with the insurance for their EpiPens, and the pharmacy is out of stock due to the back to school rush.

I don't know if it's my food allergy anxieties or the fact that son number two starts kindergarten today, after he's repeatedly asserted that he really doesn't need to go to kindergarten.  As the second brother and middle child, he lives in his brother's shadow, while being his almost complete opposite, and I feel for him.

Summer is done, and I'm facing the fact that my baby boy is starting kindergarten.

OK, time to breathe.  If you haven't gotten all your ducks in a row, it's not too late.  All will be settled and organized. 

Irene and I have written several posts on the subject of back to school with allergies, and as today is the official first day of school for SFUSD students and as I still have 17 things to do in the next few hours, I am sending you good thoughts, some positive energy, and a link to those posts, instead of reinventing the wheel with a new checklist.

If you don't have a chance to peruse that awfully good information we published in past years with links to allergy gear, templates, advice, and books, here is the link to the San Francisco Unified Medication form.  Just scroll down to 'Medication form' to print out your pdf.  And don't forget to keep your prescriptions in their original containers with your child's name printed on them.

This year I will be adding to my back-to-school to-do list the application for the EpiPen4Schools so my school can get free emergency EpiPens.  Could be one of the most important items on my list.

Lastly, as I accepted defeat and realized it is not humanly possible to tackle the mess that is my house, I decided to organize one part of our morning routine that could save us precious minutes, minutes that are critical when you're leaving the house at such an insanely early hour.  How many times have we run back into the house because we've forgotten something, only to realize that it made us late for school?  Now that Logan's starting kindergarten, getting two boys out of the house at the same time will definitely be challenging.

I cleared out a space in the hallway for each child's backpacks, sports gear, sun hats, jackets, etc.  I had each child write their names on a strip of canvas and decorate it however he or she wanted, and hung them above their areas.  Ahhhh.  Now that feels a bit better.

Do one thing that will give you some peace of mind for the first week of school, whether it's setting out the kids' first day clothing, making a list of to-do's for getting ready for school, packing snacks in advance, putting a surprise note in your child's lunchbox, labeling jackets, or having medication forms ready.  Because as much as we'd love to be supermoms and check off every item on our list while getting to sleep at a decent hour, we can only do what we can do. 

Happiest first day of school to all our San Francisco AllergyWise families, with a special shout out to the tots (and their moms and dads) who are starting a new school. 

Are You Prepared for Day Camp?

We live in San Francisco.  And like snagging a decent parking space or getting into a reputable preschool for your tot, finding and enrolling in a camp that works with your kids' busy schedule can be tough.  Crazy, right?  And yes, I've had all three kids scheduled in camps from ballet and basketball camp to baseball and art camp for the entire summer since February.

Now it's May, and public schools let out this Friday (gasp!), which means camps are right around the corner!  Arriving on the heels of Tristan's latest severe allergic reaction, I am reassessing my allergy guide for camps to make sure they have everything they need in the case of a reaction.

There are two times during the year that I put together my resources for the purpose of educating caretakers: before summer camps, and again in the fall before the new school year.  Having things in order before camps begin are even more crucial than school for two reasons: many of these camps travel or take place off site, and many will last just a week or so, giving you no time at all to form a trusting relationship with the staff to ensure that they are properly trained to prevent and treat an allergic reaction.

So I've decided to streamline my resources for the purpose of an at-a-glance guide for you and for summer camp staff.  If I have just a few minutes with them before the start of the first day, here's my to-do list complete with plans and templates for you to personalize for camp staff this year--keeping it clear and simple!

MY TO DO LIST: 

Inventory all of your child's medications, putting aside any expired Epipens, and discarding any other expired medications.  Go out and stock up so you have a set of meds for your child's pack, for your bag, and for the home.  Our allergy kit includes Diphenhydramine (Benadryl) chewables (generics can be found at Target),  Loratadine (Claritin) chewables (generics at Target or Walgreens), Naphcon A allergy drops, and an Epipen Jr. twinpack.  Keep everything in their original boxes, and make sure that the Epipen Jr. has its original label on it, with the prescription in your child's name.

On day 1 of camp, bring an expired Epipen Jr., and let your child's counselor, who has likely zero experience with an Epipen, administer it on an orange.  Sounds funny, but my children's allergist recommends it.  If a caretaker can get over her fear of using an Epipen, there is a higher chance she'll use it when she needs to.  If you don't have any expired Epipens, the trainer pens will do.

Update your Food Allergy Action Plan and have it in hand along with your child's medications to discuss with camp staff on day 1.

Here is a copy of page 1 of the Food Allergy Action Plan, courtesy of FAAN

As you can see, you will need two doctor's signatures on your Action Plan.  Some places will require these signatures in order to keep and administer medication to your child, so try to get them to your allergist or pediatrician as soon as possible.  In a best case scenario, set up an appointment with your doctor to go over the plan and discuss other concerns you have.

Make copies and have a scanned copy in your computer just in case.  When school rolls around, you'll have it ready!

Write up a guide for managing allergies with some important points about keeping your child (and all children) safe from an allergic reaction.  I used the Food Allergies Resources Guide to Food Allergens found at Kids with Food Allergies to help compile a list of hidden milk allergens for page two of this template guide:

Template for Summer Food Allergy Guide

Sample, 'Ingredient Labels Can be Tricky Business!' gives camp counselors an idea of how hard it can be to identify  hidden allergens in food labels 

Label your child's lunchbox, water bottle, food containers, and backpack with personalized Allergy Alert Stick-Ons.  These are quick and easy references for camp counselors, with bold lettering and pictures of your child's food allergies, especially good for children with multiple food allergies, like mine.

Allergy-Alert Stick-Ons can be personalized

Equip your child with a food allergy bracelet, like this customizable Allerbling bracelet, to remind others of his food allergy.

Allerbling bracelets are customizable and fun for little kids to wear

Keep your cell phone charged and on.  It will provide you some peace of mind while your kids are at camp.

Sit back and enjoy the foggy days of summer, knowing your children are in good hands!

For more food allergy resources, see Irene's recent list compiled in celebration of Allergy Awareness Week.

Book Review: Food Allergies and Me

If you have food-allergic kids or teach pre-K or lower elementary grades, I highly recommend having a copy of Juniper Skinner's Food Allergies and Me in your library as the new school year gets underway.  It is a terrific book for educating young children about food allergies.  I liked it so much I'm working on getting our local library to order copies for its parent resources collection!

I found the book's simple language and amount of information to be perfect for my 3-year-old who knows that he has food allergies but still isn't always so savvy enough to avoid potentially dangerous situations. 

Having already heard the story, Callan's understanding grows by reviewing the pictures.

The book was helpful to my veteran 6-year-old because it reiterates very important rules: never share food, always have mom, dad, or a qualified caregiver check labels, and always tell a grown-up right away if you feel sick.  I also appreciate how the boy's allergies are presented as simply one aspect of his life.  Everyone -- allergies or not -- is different in some way.

Kids must "investigate" with adult assistance in order to be sure a food is safe.

Last thing, I love that the book was written in first person.  Very kid-friendly and read like a true story.  It resonated with my kids because it is a reflection of their lives with food allergies. 

Author Juniper Skinner is a mom of two kids, one of whom has multiple food, dander, and pollen allergies.  To find out more about the woman and kids behind the book, check out Juniper's witty blog, This Little Piggy Went to Farmers Market.

Play dates & Allergic Children

"Here is his lunchbox.  He's allergic to dairy, egg, shellfish, and all nuts.  Fruit and water are okay.  If you're not sure, don't give it to him.  Make sure he washes before eating.  Here is his Epipen, Benadryl, eyedrops, and Cortisone cream.  If he seems like he's having an allergic reaction, don't hesitate to give him Benadryl, or his Epipen if he's having trouble breathing.  Oh, and...have a great time!"

Play dates are great.  And play dates are nervewracking and can be a source of much anxiety for an allergy mom.  After hearing what I have to say, parents are probably wondering why they invited Tristan over to their house in the first place (I'm only half kidding...).  Here are some hints to help make your child's play date fun, safe, and a little less worrisome for all:

Pack Your Child a Lunch (and lots and lots of snacks)

The easiest and safest thing to do is to send your allergic child to a friend's house with his own lunch and enough snacks to stave off hunger for the duration of the play date (including one or two favorite treats) with specific instructions about whether or not your child can be served any other types of foods.  I usually ask that they stick with whatever he's brought in his lunchbox, plus fruit or water if they're having that.  This is also a big help for, um, selective--some might say, picky--eaters (ahem...). 

Always label your child's lunchbox with his name, important phone numbers, allergies, and medications.  I write it with a Sharpie directly on the inside cover.


Send your Child's Medications

Your child should never go out of the house without his allergy meds.  I say never, though I find myself (on rare occasions, but it happens), out of the house with the kids and realize I am without them.  Just the realization puts me in a semi-state of panic.  So you can only imagine how stressful it would be for another child's parents to be ill-equipped to treat your child in case of an allergic reaction.  If you're leaving your child in someone else's care, please PLEASE PLEASE send along his meds, too.


Epipen how-to's

If your child carries an Epipen in case of anaphylaxis, do a quick demo with a trainer pen (it comes alongside the Epipen in the box), showing the other parent how to administer if need be.  Also go over when he would need to administer it and that 911 should be called after it's given.

If you have a spare, leave the trainer with the parent; or better yet, bring an expired Epipen and let the other parent practice on an orange.  (I'm not kidding--my allergist recommends this.) 

For tech-savvy parents, there's MyEpiPenApp for iPhones, iPads, and iPod Touch, and includes a demonstration video and slideshow for administering the Epipen, and the ability to create personalized allergy profiles and to share them via email.  If only I had an iPhone.

Play date Cards

Funny.  My kid has a play date card and I don't even have a business card.  Anyhoo...play date cards and mommy cards are the latest thing in the business card industry.  And that means people are still trying to figure out if they really are the latest thing, and are giving them away cheap.  Yay! 

I got mine from Kodak Gallery because all my pics are stored there and it was super easy to insert Tristan's picture and add information, like his food allergies, meds, and my cell number.  Okay, no offers right now but they usually have some kind of promotion going on.  Another inexpensive option is Vistaprint.  Or opt for fancier ones (yes, that means pricey too!) at Felix Doolittle and Tiny Prints.  For more choices, search "mommy cards" or "play date cards."

Don't forget the bling

The Allerbling, or whatever jewelry your child is willing to wear that somehow lists his allergies.  If he won't wear something, Jeeto's allergy patches and stickers are a cool way to liven up any lunchbox or backpack.

Pets

If your child has confirmed or suspected pet allergies, ask about whether pets are in the house and explain your rules for touching or being around the family's pets.  Tristan is severely allergic to cats (as am I), so even stepping foot in any home with a cat (even if the cat isn't home), sets off a unstoppable string of sneezing and puffy itchy eyes that you may never have seen the likes of (nor do you want to).  The fur left on the furniture of even the most spotless of homes will do it to me. 

Keep your cell phone on during the play date and hope for the best, but expect the unexpected.  And when it's your turn to host the play date for your child's food allergic friend, provide the same courtesy that others have provided you.  Your child's gonna have a blast!

Book Review: Food Allergies

Food Allergies by Christine Taylor-Butler is a straightforward book about -- you guessed it -- food allergies.  The book explains the body' immune system, what allergic reactions might look like, unexpected foods and products that often contain common allergens, food labeling rules, and the risks of cross-contamination.

This is a very detailed book that goes beyond listing the most common food allergens and possible reactions.  My 6-year-old read parts of it by himself and it reinforced his need to avoid food-sharing and be vigilant with label-reading.  Much of the scientific/clinical language (immunoglobulins, antibodies) and in-depth information on government regulation will be too difficult for elementary school readers to fully understand on their own.  This would be good to read with your kids so that you can explain some ideas and gloss over others that are too abstract.  For younger audiences, definitely focus more on the diagrams, photos and accompanying descriptions. 

Common foods with allergens you might not have suspected.

Photo of a girl's swollen eyes during a mild allergic reaction.

This book is actually a terrific read for adults working with food-allergic children.  The visuals in the book are helpful and to the point, especially those that show what a child's body might look like in the midst of an allergic reaction. 

The book asks if it's safe for a peanut-allergic child to eat a friend's cookie.

Photo of a child's swollen lip during an allergic reaction to peanuts.

You can find this book for sale on Amazon.  I am planning to loan this book to Ryken's and Callan's teachers as a quick introduction to the world of food allergies.  I recommend all school libraries should have a copy of this book on their shelves as a resource to its teachers and curious parents. 

Allergy Ready: preparing educators for anaphylaxis at school

Food Allergy & Anaphylaxis Network and Food Allergy Initiative of Canada have helped to create a comprehensive online program for educators amidst the growing risks of food allergies. 

Allergy Ready's C.A.R.E. (Comprehend Avoid Respond Enact) course encourages school communities become "allergy smart" to prevent, recognize, and respond to anaphylaxis.  The online tutorial includes education on common food allergies and insect stings, recommended schoolwide sanitary practices, symptoms of anaphylaxis, spreading allergy awareness throughout the school community, and staff-training on when and how to use of Epi-Pens.  Along with the narrated slides, detailed explanations, and step-by-step training, the course also provides quizzes and scenarios to test your understanding along the way.

Among the information in the program, I saw Anaphylaxis Canada's "Think F.A.S.T." poster, an acronym for the four zones of possible anaphylactic symptoms:  Face, Airway, Stomach, Total body (like the skin).  I love the poster.  It is a quick and easy way for educators and students to recognize a potential allergic reaction.  I am planning on ordering copies for both of my son's schools through Anaphylaxis Canada's product catolog.

A cheat sheet on anaphylaxis, this Think FAST poster is up in Ryken's school and our pantry door.

The C.A.R.E. course took me roughly 60 to 90 minutes to complete.  (My studies were intermittently broken up by my kids and sleep...)  It was really informative.  Being a food-allergic mom of kids who do not have asthma, I learned a lot in the section addressing asthma attacks versus anaphylaxis.  The two reactions can look similar but an inhaler will not treat anaphylaxis.  It's best to give an Epi-Pen shot.

A hugely important piece of advice is, when in doubt, err on the safe side and administer the Epi-Pen at the start of a suspected anaphylactic reaction.  Side effects (increased heart rate, shakiness) are mild and short-lived.  However, "the potential side effects are far outweighed by the severe risks of not treating an anaphylactic reaction which could include death," according to the CARE course.   In cases where kids have died of anaphylaxis, epinephrine was underused, delayed, or not given at all. 

Please share www.AllergyReady.com with your allergic children's school personnel or print out a flyer.  I forwarded the link as well as the press release to the school/district nurse, principal, and teachers.

Wishing you all a safe school year!

School year preparations - a visual guide

School starts up for Ryken in less than two weeks.  As exhausting and wrinkle-inducing it has been to have my two boys at home, I'm still not quite ready to say goodbye.  Ryken begins a Spanish dual immersion program at a new school this year and this means getting to know a new community and having them get to know our family, food allergies and all.

Last week Sarah provided an awesome guide for back-to-school to-do's to prepare for the school year.  Below is a list of things that I'll be doing to make sure Ryken's as safe as can be starting from Day 1.  I included sample letters and photos in case you need inspiration.  If the letters are helpful to you, feel free to use to borrow language or use the letters as templates. (No lawsuits over plagiarism, I promise!)  Hopefully, between Sarah's post and mine, you will have what you need for the new year.  

1. Introduction letter to teacher  -- Introducing Ryken.  Talking about his allergies, how we would like to handle food and class snacks, and how to keep him safe from allergic reactions.
2. Food allergy alert -- Note with clear rules on what to give or not to give, reminders to check for food/materials safety, and details on his food allergies, types of reactions (mild, moderate, severe), and instructions on when to administer medication.  Make extra copies for classroom teachers and support staff .  Attaching a photo is especially important so that substitute teachers, librarians, prep teachers (PE, art, music, science), and office staff can easily identify your child.
3. Email or letter to parents -- Be friendly, direct, and open.  I usually simplify the teacher letter for this but describe a couple allergic reaction experiences so that parents understand Ryken's allergies and where our school concerns come from.  I also ask parents to contact me if they are ever planning to bring in a class treat for birthdays because I am always happy to provide a safe treat for Ryken.  So far in my experiences, once a food allergy gets attached to a kid's face, parents are very sympathetic. 
4. Medication -- up-to-date sets for school, afterschool care, and home.  Be sure to keep original packaging (to verify the medication is prescribed to your child) or else districts may not be legally able to accept this.  Include specific allergy info and instructions.  In an emergency or disaster situation, someone unaware of your child's conditions may need to care for them.
5. Labeled lunchboxes, water bottles, backpacks -- Label to alert people to your child's food allergies (I love Allergy Alert Stick-Ons) and also to include your child's name and parent/doctor contact numbers in case of emergencies. 
6. Treat box -- I like to make sure everything in here has a food label for extra safety.   
7. Suggested reading for class read-alouds or just for teacher education
8. List of unsafe ingredients(for my kiddo it's milk, peanuts, and tree nuts)  -- Pop these travel-sized lists in the treat box so teachers can easily locate them. 

Don't forget original packaging, info on symptoms, medication and dosage and a measuring cup!

Label your treat box and include avoidance lists to prevent mix-ups with other food-allergic kids.

Flashy allergy ID bands constantly remind teachers and kids about food allergies.

Books can further educate teachers and kids about food allergies.

We used a Spanish alert sticker and a luggage tag.

The crazy yellow color and huge sticker will help kids avoid mix-ups.

A last bit of preparation that has been ongoing is making sure Ryken does not share food with anyone.  No matter how confident he is that he has had a treat before, I do not want him eating anyone else's food.  There is still a risk of cross contamination with allergens on munching kids' fingertips and allergens in the same lunchbox, or the possibility that the food's ingredients have changed.  Ryken generally accepts that he isn't allowed to accept friends' foods but, at the self-righteous age of 6, he sometimes lets his desire for snacks and overconfidence in a familiar snack's safety to overtake the safer choice.

We are looking forward to hearing about everyone's new school year experience.  I'm crossing my fingers that everything will go smoothly, health-wise and education-wise.

Epipen Reminder for School

Please please PLEASE store your Epipens in their boxes!  My son is at school today without an Epipen on hand because they won't take an Epipen out of its box.  Not a happy mama today...

Back to School (with food allergies)? Already?

I am deep in vacation mode.  You could probably tell from my lack of posts lately.  I am without any of my usual distractions from home: my DVR, sewing machine...and even our laptop is usually monopolized by my husband's attempt to work.  Surprisingly, relaxing is very hard work.  Just left with a few library books brought from home and daily ritual of sleeping in and napping in the afternoons.  Who knew I was so sleep deprived?

Slowly, slowly, though, thoughts of back-to-school have crept into my mind.  And with them, my thoughts of anxiety over a new teacher, classmates, birthday parties, soccer practice snacks...

And then I realized I never even collected Tristan's allergy meds from his camp director.  Wow.  I am not organized.  And school starts in less than a week.  Yikes!

A few things to do to get yourself back on track for back to school (if you're like me, and let summer get the best of you):

1. Locate your extra allergy meds bag and label or relabel it appropriately.  I will need to relabel Tristan's high tech freezer bag with his name and his new classroom and teacher's name.

2. Get your school medications forms filled out.  For me, I will have to locate them first (Remember when the school secretary gave them to me way back in May for the upcoming school year?  Unfortunately neither do I), then bring them to the allergist to have them filled out if necessary.  The allergists generally don't like it when you bring them a 6 page packet and tell them you need it asap.  If you don't have your forms yet, you can probably contact your school district's office or school directly about a week before school resumes and get them.  After some searching, I found San Francisco Unified's Allergy Emergency Care Plan (scroll down) and Medication Form (three more bullets down) under "Medications and Emergency Care Plans."

3. Label your child's lunch stuff, including thermoses, food containers, and lunch sack with her name and allergies if you can.  You can use stickers or just write all the info clearly with a Sharpie.  You may also include his doctor's name and number, and your name and number.

4. Write a letter to your child's teacher with enough information so that she understands the severity of your child's allergies and a short health history.  Be sure to include a recent picture, some of his common symptoms and words your child uses to describe his allergies (tongue feels itchy, food tastes spicy, etc.), an Epipen Jr. cheat sheet (find printable version on this page), and other resources.  I like to provide Tristan's teacher with an age-appropriate picture book she can read to the class, and some birthday party treat suggestions that are safe for your child (I started a streak of soy ice cream Cuties at Logan's school).  I also like to ask at this time if I could send a letter to the other class families about his allergies (this usually gets distributed at Back-to-School night).  This year I'll also include our blog address, along with my other contact info.

5. Write a letter to the other families in your child's class so that they also understand his allergies.  This might contain information similar to the letter to the teacher.  Keep a friendly and open tone so that they feel they can come to you with questions now or in the future.  Include a cupcake or cookie recipe that is safe for your child (be very specific in terms of products you use), in case other families are inspired to bake something your child can partake in.

Here is a Wacky Cake recipe you can copy and paste onto your letter (egg, dairy, soy, nut free):
Ingredients:
1-1/2 cups flour
1 cup sugar
3 tablespoons unsweetened cocoa
1 teaspoon baking soda
1/2 teaspoon salt
1 teaspoon vanilla extract
1 teaspoon vinegar (I use balsamic)
5 tablespoons vegetable oil
1 cup cold water*

In a mixing bowl, stir together flour, sugar, cocoa, baking soda, and salt.  Add vanilla, vinegar, oil, and water (some recipes say to make three wells for the vanilla, vinegar, and oil, and then add the water over all of it and mix.  I just throw it all in and it seems fine) and stir until moistened.  Pour into a lightly greased 8x8 baking pan or lined or greased cupcake pan (makes about 12 or so).  Bake at 350 degrees Fahrenheit for 25 to 30 minutes, or until it springs back when touched lightly.

6. Consider getting some play date cards with essential allergy info, in preparation for the inevitable play date season.  Tristan's have his pic, name, allergies, meds, and my cell info.

7. Locate your allergy bracelets, necklaces, or other jewelry to help your child, his teacher, and everyone around more aware and confident about his allergies.

8. Plan on discussing your child's allergies with other parents in the class.  This may take some mental preparation, not to sound too pushy or anxious, while still straightforward and friendly.  It is my job to help Tristan become "that Star-Wars-loving kid in the class who loves building stuff" instead of just that "food allergy guy".

9. Buy a box of allergy-safe snacks (individually wrapped are good choices) for your child's classroom teacher to stash in case of birthday parties and other celebrations.

Some dairy, nut, and egg free options for classroom stashed snacks

10. Take a deep breath, take a mental picture of your vacation/staycation (better yet, print out and frame some to put around the house), and get ready for a whole new school year.  Because before you know it, your child will have made a few new friends, grasped concepts he never could have before, and maybe even completed his homework without any nagging from you (ok, maybe I am stretching it a little...).  Happy new school year!

Camp Allergy Education 101

You've searched all over the place to find the right camp for your child.  Some seem more allergy-prepared than others, which is to be expected.  Most of us aren't school teachers, allergy education trainers, or allergy mom bloggers desperately trying to get the word out (I said most of us); so, here are some resources for you to gracefully and with every good intention offer the camp you're interested in.  Go ahead and send them a link to this post!

Start here.
Irene wrote a wonderful post a few months back with links to some fantastic resources, including the Food Allergy and Anaphylaxis Network (my personal favorite).  Under 'education', they've got comprehensive resources for camps and schools, including a 'Back to School Toolkit' with links to printable posters, brochures, and checklists perfect for staff training, phrases to describe How a Child Might Describe a Reaction (Tristan and Logan often say something feels spicy, or that their tongues or lips tingle or hurt), and their five steps to Being a PAL, which can easily be incorporated into camp rules and procedures:
1. Don't make jokes about food allergies.
2. Don't share food with someone who has food allergies (or just not at all)
3. Wash your hands after eating.
4. Ask what your friends are allergic to, and help them avoid it.
5. If a food allergic friend becomes ill, get help immediately!

The You Tube Generation
Many of your child's camp counselors will probably be in their teens, with active Twitter, Facebook, and Youtube accounts (as I'm writing this, they're off to something new!).  For high impact for the tech savvy generation, email the camp a link to a 6 minute youtube video called Kids Living With Food Allergies produced by the Food Allergy Initiative, featuring some very articulate allergy kids speaking candidly about their food allergies (it's hard not to love this video and learn so much from these super cute allergy kids!).

Snacktime
If they'll be serving your child snack or other foods, provide them with cheat sheets for the common allergens.  Finding out if something contains dairy, for example, doesn't always mean searching for the ingredient "milk."  Buttermilk, whey, and casein (and many more) are all other forms of dairy.  As allergy moms, we know that hidden allergens are everywhere; but for others, this is new (and important) information.  If anything, it'll make them think twice about serving up your child snacks without discretion. 

Don't forget to give them some safe snack suggestions for your child, being as specific as possible; or, just send along a stash of snacks for your child labeled with her name).

Wear Your Allergens
If you haven't already, research and find an allergy necklace or bracelet that your child will wear--easier said than done.  Tristan has a dog tag listing all his allergies and meds.  I finally convinced him to wear it to school, but found that the chain actually irritates his skin after a long day of school or play, so he doesn't usually wear it anymore.  Check out STATkids or Allerbling (great for multiple allergies) for some fun allergy bracelets your child is sure to want to wear!  And Jeeto's patches for lunch bags and backpacks are WAY cool.

Everyone Loves a Good Book
Provide the camp with (or refer them to) a allergy-themed picture book that can be read to the children at the camp to open up a discussion about allergies, if possible.  Depending on age, there are lots of good ones to choose from.

With open communication, education, and information, it is possible for your child to thrive at camp this summer.  Get more info about keeping your allergy kids safe at camp, send them off with some peace of mind, and enjoy a little me time!

Fun, Sun (or lots & lots of fog), and Staying Safe at Summer Camp

When you're an allergy mom, you learn to be prepared.  You learn to be prepared because you know that if you're not, it could mean life or death.  For some, being organized and being prepared comes naturally; while for others (ahem...), life can feel like a blur of diaper changing, piles of dirty laundry, overdue library books, toys spilling out of every crevice of your house--well, you get the picture.

For those of us who find ourselves, shall we say, organizationally challenged, summer camp season will tend to sneak up on us.  This year, we are vowing to start early.  It's May.  We're gonna talk summer...check a few items off the list and you'll feel much better.  I promise.

Meds Inventory
Take an inventory of your child's allergy medications--both prescription and non.  Most insurance plans will only allow you one Epipen per month, so if two or more of yours needs replacing, you should call into your pharmacy today to make sure to get the ball rolling (which reminds me, I need to do a pick-up at Walgreens today...).  They might have similar restrictions for asthma inhalers (sorry, I'm not as knowledgeable on this).  If they'll allow it, you'll need at least two sets of meds for camp--one in his backpack as well as a set with the camp administration. 

Stock up 
Don't forget about any environmental allergies your child may have, especially if he'll be spending a lot of time outdoors--symptoms may manifest themselves much more fervently than they did when your child was sitting inside a classroom for most of the day.  Stock up on any meds he might need for prevention or relief.   
By the way, since the Benadryl recall I have not been able to find any of it in melt tab or tablet form for kids (or even those squirting travel pack thingies).  Just yesterday, I noticed a generic version in a kids grape melt tab at Target and picked up a stash.  Ask your doctor about it if you're unsure.  And if you do add these to his medication bag, you'll need to list them on your Food Allergy Action Plan.

FAAP
My what?  Your Food Allergy Action Plan.  Food Allergy and Anaphylaxis Network (FAAN) has a link on their site that enables you to easily print out the form in one of 8 languages.  Print it out, fill it out, and attach a recent picture of your child to it.  Make copies so you won't have to fill it out over and over again.  Better yet, if you are due for an appointment with your allergist (or if you end up making an appointment just to touch base--probably a good idea), you can bring in a blank form and have the doctor answer any questions you have about the form.  Have the doctor sign and date it so you can use it all summer.  While you're at your allergist's office, update any prescriptions which have or are about to expire.

Some Q & A
When you're searching for camps suitable for your child, ask each program about its experience with allergy preparedness and experience with food allergies.  Some questions to ask:
1. What food allergy training has your staff received?
2. What is your experience with anaphylaxis/administering Epipens/severe food allergies/asthma, etc?
3. What is your emergency plan for severe allergic reactions?
4. What food is prepared by or given to the participants, and how would you accommodate my child and his food allergies?
5. What is your peanut policy?

Provide Resources
A camp's experience (or non-experience) with allergies doesn't have to be an end-all.  Use your good judgment and instincts.  If you're set on a particular camp that doesn't happen to have much knowledge of food allergies, offer to send them some resources that they can use to help train their staff (more coming soon!).

Allergy Kits
Prepare an allergy emergency kit for the camp to keep while he's in their care, along with another one for his backpack or as a back-up to be kept at home or in your bag.  Tristan's is just a freezer bag with his name and allergies listed on the outside.  Take the Sharpie and label everything inside with his name, too.  The emergency kit should contain: allergy medications as instructed by your child's doctor (including cortisone creams, allergy eye drops, inhaler, epipen, etc.) and a copy of your child's Food Allergy Action Plan.  I also keep sunscreen in his pack for those three or four days the sun manages to push through the summer fog.  Get into the habit now of applying the sunscreen every morning before school if you haven't already, and show him how to apply it himself so he'll be able to reapply when you're not around.  If he has really sensitive skin, teach him to use only his sunscreen (For Tristan, random sunscreen + sweat = skin rash/eczema flare-up).

Personal Letter
Start drafting a letter to present to the camps about your child's allergies.  Don't freak out about doing this.  It's your chance to tell your side of the story, and personalize your child's allergies.  We will post some examples to help you get started soon!

First Impressions
On the first day of camp, bring in another copy of your child's Food Allergy Action Plan, his allergy emergency kit(s), and the personal letter detailing your child's experience with allergies.  Make sure to introduce your child to each teacher or caretaker so that they can identify him, and so that he can recognize them if he needs to ask for help.  Show the staff how to identify his allergies on his allergy bracelet/necklace--it's a helpful and quick reference until they've learned all his allergies.

Be a Chatterbox
Keep an open dialogue with the staff and insist that they keep you informed of any allergic reactions or allergy-related issues they may be concerned of.  If cooking lessons or snacks worry you, gather information about ingredients in advance so you'll know whether you need to provide alternate snacks or have him pass on the cooking this time (I know, sad...but better safe than sorry.  Logan came home once with an eyelid almost swollen shut after a cooking lesson that used eggs).

Teach Your Kid
Continue educating your child about keeping herself safe from allergic reactions--not sharing food, identifying allergens, washing hands before and after eating, etc.  

Stay positive and know that you are being a fabulous mom by providing your children with the opportunities and memories that will impact their lives in so many ways.  All in the name of love!