Who knew that when starting at a new school that my food allergic child would cause more stress than the school itself? We’ve always known that our child has a great deal of difficulty with change, even if she doesn’t show it anywhere but in the safe confines of our home. I’m not sure if she’s this way because of the food allergies or whether she would have been like that regardless, all I know is that change creates a great deal of anxiety.

Before school started, we had a great meeting with the school counsellor assigned to our child and got a better sense of how they handle food allergies and how we could work together. We were all pleased to find out that they have dozens of food allergic children in the school, which makes sense given the current statistics. But still, it was a consolation to Megan to know that she was not alone.

After that, our next step was to take a new picture of Megan to update her anaphylaxis poster plus recraft a letter for the parents in her classes and send those off to the counsellor for distribution to all staff. The first mistake I made was including Megan in the process. I figured that since she turned 15 the previous week, she should be included in making a new letter for high school. Apparently, nothing I said was right. In the end, after many tears, it basically came down to the fact that she didn’t want to be singled out as different. I get it, believe me, I do, but our reality requires everyone around her, including her peers, to be educated.

The next wrong move was having her check out the updated anaphylaxis poster before sending it off to the counsellor with instructions to post on neon paper and put in all Megan’s classrooms and staff areas. Blowup number 2 came at that point. I’ve done these posters every year since she started school, including when she moved to new schools. But at the age of 15, the idea of a poster if mortifying. Again, I get it, but in my book food allergies are one time when people need to know who you are. And that comes from experience when I didn’t know all of the students in the school I was teaching at.

So once that was done and my child wouldn’t even look at me, she went off to her first day for just a morning of orientation.
Megan started off the school year with a homeroom teacher who has peanut allergies. Sounds good right? Until the part when they realized that during the day when she isn’t in homeroom, they have special needs kids and Aboriginal kids (we have a reserve very close by) working with different counsellors, etc. All good except when those kids are hungry, guess what they feed them? Yup, peanut butter sandwiches. And the concern expressed by the aides who feed the kids was that some of those kids may be a bit smeary and not clean up well. I was really pleased that the counsellor informed me of this situation; I felt that the staff had Megan’s best interests at heart.

Therefore, that afternoon I moved Megan into a homeroom that is a science lab because no food is allowed in at any time. The school was great in providing the suggestion and in making it happen fast but Megan imploded. For me to move her after she got comfortable in that new classroom that first day and after I sent a letter plus posters to be posted up all over the school with her face on them, was unforgiveable. She figured she’d get through her homeroom for the next 3 years (they stay in the same room with kids of all ages), by not touching anything. Highly unrealistic to the logical thinker but completely normal to a kid ready to run screaming into the night. All I could think about was how teenagers have the highest risk of anaphylaxis and now I know why.

I was a basket case. How do you handle when the parents and school are working together great but the child is completely not on board? It caused me more than one sleepless night and many heart to heart talks with my husband. In the end, Megan did apologise to me when she realized she was being unreasonable and that we all had her best interests at heart. So we seem to have settled down but I’m still dancing on eggshells a bit.

Just don’t let Megan read this blog – I’m not sure our house could survive it.

An article published earlier this month indicated that a recent UK study shows that food allergic children and their families feel isolated, stigmatized and unfairly excluded. To read the total article, you can link here: http://www.huffingtonpost.com/2011/08/17/kids-nut-allergy-teased-excluded_n_929809.html

I would have to say that overall, we’ve been lucky not to have many issues happen with our allergic child but that doesn’t mean that they haven’t been there. There was the time that a good buddy at school told our child that she couldn’t have her to her birthday party because her mom didn’t want to deal with her peanut allergy. It took all of my strength not to phone that mom and have a little discussion. I didn’t in the end since I didn’t really think it would change anything except mortify my child even further.

There was also the time that one child wiped his hands down all of the bus seats as he got on the bus, telling everyone that he’d just had peanut butter. We were really pleased with how that got handled by the students on the bus themselves, many who had been riding that bus with our daughter for years and were very protective of her. Every child on that bus turned on that young man and kicked him off until he spoke to the bus driver. We then let the principal know when our child got home and told us what happened but peer pressure really made the difference that day. He never tried anything like that again.

But it’s also the incidents that aren’t so easy to quantify; when everybody else gets the birthday treat in the classroom or someone’s sharing candy with all of their friends but my child can’t take it. It’s definitely isolating, even when there is no evil intent. All kids need to learn (often the hard way) that life isn’t fair and sometimes bad things do happen to good people but there are plenty of opportunities to learn that out there without the added exclusion that food allergies can certainly bring.

FAAMA, The Food Allergy and Anaphylaxis Management Act was passed into law in the United States after being signed by President Obama on Tuesday, January 4, 2011. So what does this Act mean to you as a food allergic parent?

Here is the official summary of the ACT which was introduced in February 2009:
Requires the Secretary of Health and Human Services to develop and make available to local educational agencies, schools, early childhood education programs, and other interested entities voluntary guidelines to develop plans for individuals to manage the risk of food allergy and anaphylaxis in schools and early childhood education programs. Directs that such guidelines address:
(1) parental obligation to provide the documentation of their child’s allergies;
(2) the creation of an individual food allergy management plan for each such child;
(3) communication between schools or programs and emergency medical services;
(4) reduction of exposure to anaphylactic causative agents;
(5) food allergy management training; and
(6) administration of epinephrine.
Allows the Secretary to award matching grants to assist local educational agencies in implementing such food allergy and anaphylaxis management guidelines.

What the law will actually do in its practical application remains to be seen. At the very least, this law should give parents a legal means to fall back on in EVERY state should their school/school district administration not accomodate for their child’s anaphylaxis. Further, it allows for the legal means to give epinephrine, which seems to have been a cause for confusion or inaction in schools.

While there are many teachers and administration who have been wholly supportive of anaphylaxis plans, many parents report to me that they have been treated as second-class citizens in the school system and even have had it suggested that they home school their child. While many allergic parents do pursue this option, it should be by choice, not fear or intimidation. As a former teacher, I can’t imagine that any teacher or school would be apathetic about anaphylaxis but it has been a very real issue for many around the world.

It will take some time for the voluntary guidelines and educational materials to be developed and funding to be provided for training. But in the meantime, a very important first step has been taken for those with anaphylaxis in a school setting.

Just after Christmas I heard that a Chicago teenager had died of anaphylaxis on the last day of school before the Christmas break when she had Chinese food with her classmates. These stories always make me cry because while I cannot understand what it is like to lose a child, I can tell you that I have imagined it more than once. My heart goes out to the family of this child.

From all accounts, this was a child whose parents had well-equipped her for living with her food allergies. School staff had checked on the safety of the food to be served more than once and school officials and classmates were well aware of the peanut allergy. The details have not been released so the public may never know what exactly happened. There is some question of whether epinephrine was injected. The stories indicate that it is against Illinois law for staff to administer epinephrine unless the prescription is specific to the student. If you’d like to know more, you can read the Chicago Tribune article and the Allergic Living article.

I have many questions after reading the accounts; not in the interest of assigning blame but to understand and learn about what I can do with my own child and her school. The accounts indicate that in Illinois students are not allowed to have epipens with them and teachers can’t give another’s epi-pen to a child having a reaction. To me this is highly disturbing. Is this an indication that the fear of liability trumps medically necessary action?

So now you’re wondering, okay Alana, you title says Tragedy and Hope; where’s the Hope part? While we can never bring back these children, we can use these tragedies to better protect all anaphylactic children. After a similar death in an Ontario school, we got Sabrina’s Law. Sabrina’s Law helped provide the background for my province’s anaphylaxis policy and gave allergy advocates around the world a springboard for their own country’s anaphylaxis laws and policies. I have Sara Shannon to thank for making sure that the lessons learned from her daughter Sabrina’s death would not be forgotten. My child has benefited from that advocacy.

To that end, more hope was created yesterday in the US when President Obama signed into law FAAMA. This stands for the Food Allergy and Anaphylaxis Management Act, a national law for all states to protect anaphylactic children in schools. Voluntary guidelines and materials will be created for states to access. You can read the information about what this law means and how it came about on the FAAN website.

I look to these developments with hope to educate all about the very real risks of anaphylaxis and to prevent any more needless deaths.

Why does it always feel like the new school season sneaks up on me, even when I’m thinking that I’d welcome the return to routine?  Some of you have already gone back to school (either yourself or your kids), and some are heading back shortly.  Even if you don’t have children and school is the furthest thing from your mind, it’s still a great opportunity to review the systems you have in place to control your special dietary and medication needs. 

1.  I know it is stressful to put your child’s life in someone else’s hands.  But remember that this may be an educational journey for the staff you’re speaking to.  It is imperative to work through the issues positively but firmly and recognize that it may take several meetings and contact on your part to implement an appropriate plan.  Having all staff who will deal with your child present at the same meeting is helpful but also ensure that part-time staff or teacher substitutes are included in the staff plan.  If you are in a workplace environment, take the time to educate your boss and co-workers.  Don’t assume that because someone has dealt with your same medical concern before, they know everything about the condition and treatment.

2.  As a former elementary teacher, I really appreciated having the parent of the child with medical concerns (food or otherwise) provide me with some helpful information and tips that I should be aware of.  This could include suggestions for healthy lunch ideas for the class that don’t include the allergen, facts about the food allergy he or she will deal with, providing safe treats to keep in the classroom and perhaps offering to come in and speak to the class about your child’s allergy.  Back to school is an incredibly busy time for teachers so taking away the burden of doing their own research about the allergy is appreciated and gives them something to refer to throughout the year.

3.  If the school does not already do so, create a bright, colorful poster with a picture of your child on it, what they are allergic to and the steps to take if a suspected reaction occurs.  Consider making several posters for the office, the staff room and any classroom your child will be in.  This is one situation where it is okay for your child to stand out; it may save their life.  Dorm rooms and offices where allergic adults are should be considered for this as well.

4.  Now is the perfect time to ensure that your epi pens are up to date, any antihistamines required are stored with the epi pen and instructions have not worn off the side of your epi-pen. 

5.  If you do not yet have an alert bracelet or necklace for yourself or your child, now is the time to get one.  If you don’t want to get a medic alert brand bracelet, you can find what you need at your local jewellery store and have it engraved as to your medical condition.  If you already have a bracelet, check that any engraving has not worn down and is still readable by emergency personnel.

6.  Do you have any old epi-pens or an epi-pen trainer?  If not, get one.  This is the time to refresh yourself on the use of the epi pen at the same time as teaching any new people in your or your child’s life from teachers to daycare providers and bosses to friends.

7.  Make sure your child is well prepared.  For us, this meant a lot of instruction on hand washing and setting ground rules for not sharing food, etc.  Include them in their choices of safe treats that will be kept at the school so they always know they’ve got something yummy should an unexpected food event occur, like another child’s birthday.

8.  Speaking of hand washing, make sure that your school has appropriate soap and towels (we had to get the school board to put up liquid soap dispensers) and that your child always has ready access to running water with ample supplies.  Hand washing before eating is much easier to control then having all surfaces washing consistently.

9.  Be prepared to be involved at school with everything from baking/bringing safe treats for parties to field trips and participating on the Parent Council.  It’s time consuming but worth every second.

10.  Finally… be good to yourself.  Worry and sleepless nights take their toll on not only you but your allergic child.  Take the time to spend extra time with your allergic child doing something fun just for the two of you; you’ll be glad you did.

Do you have some of your own tips?  Be sure to add your comments.

I find Valentine’s Day stressful with food allergies.  In the past, when our allergic child was in elementary school, I found it to be the most stressful day of all.  It all came to a head when Megan was in grade 4 and Valentine’s Day became a food buffet of everything she couldn’t eat laid out in front of her.  Score in her head?  Other kids:  30 treats,  Me:  2 Read more »

I’m afraid to say it really loudly without jinxing it… going back to school with our allergic child is going smoothly! 

First, I got an email a couple of weeks ago from the school principal checking which classes my allergic child had been in last year to see which additional classrooms she’d be in that would need the addition of hand sanitizers and soap for wash stations.  I think this was the first time I hadn’t had to initiate contact to make sure that all of the basic hygiene issues we have insisted on were in place for her return to school.

Second, I’ve always created a poster for my child each year that is posted in all of her classrooms, staff room, etc. which familiarize all staff with what her allergies are, what she looks like (simple but necessary) and what steps to take in the case of a suspected allergic reaction.  Last year, the vice principal was so taken with the poster that I’d created for my child that she used it as a model to create a similar poster for all of the children with health issues in the school.  Only the life-threatening health issues are posted, the rest of the childrens’ information goes into a binder for staff.   This is the first year I haven’t had to create my own poster as the vice principal contacted me  to see whether any of our health issues had changed (they have, we need to now add chickpeas to the list of foods to avoid).  So that’s all done with me doing nothing in that regard.

When the  phone discussion with the vice principal veered to my child’s new teachers and staff training on anaphylaxis and the use of the epi-pen, I was pleased to find out that a district-wide staff training day would take place next week and then the following staff meeting had anaphylaxis and training on the agenda.  I offered to send in the epi-pen trainer and an old epi-pen for the staff meeting so that’s all been taken care of.

While it was agreed that the letter I pen each year to the parents of my child’s classmates (including homeroom where she eats her lunch) would go out again along with my list of suggestions for the multitude of friendly foods/snacks that can be brought to the classroom, that’s all I needed to do. 

I’m not sure what to do with myself.  It all seems too easy – I keep racking my brain to see what I’ve missed.  I don’t appear to be missing anything, could it really be that easy?  Just in case, I’m knocking on wood.

I mentioned in an earlier post that we were finally hitting the time when our allergic  child was scheduled to begin the Foods portion of her grade seven rotation and we had not yet decided whether that was going to be a viable option for our child.

These  new situations as allergic children grow up bring back all of that anxiety of just how much we can trust someone else with the life of our child and, now that she’s 12, the emotional and social aspects of dealing with a life threatening food allergy in school.

Thankfully, we’ve always had great support at school from school administration, staff, and other families and students with very little controversy.  Unfortunately, that doesn’t stop me from having sleepless nights imagining what might happen.  These are anxieties my husband and I try very hard not to pass along to our child but even hiding those often unfounded fears from her can be stressful itself.

Our meeting went very well and included the principal, the home ec teacher and our child.  A great bonus was that the home ec. teacher has a grown up daughter who has severe lactose intolerance which does not respond to lactaid pills so she’s known a lifetime of avoidance of dairy.  Life is always so much easier as an allergic parent when who you’re talking to has walked in your shoes, even slightly.

So we’re going ahead!  A stove will be set aside for my child, I’ll be sending in utensils and baking equipment which will be kept in a sealed bin we provide and washed only by my child and her baking partner.  In addition,  my child’s baking partner has a brother with peanut allergy so this will allow that child to bring home safe class projects to share with her family.  The teacher will be providing me with all of the term’s recipes and I’ve offered to purchase the items we’ve deemed as unsafe due to bulk purchase and/or possible cross-contamination.

I’m thrilled and my child feels comfortable. Whatever extras we may need to do to make this work is nothing compared to the freedom of being (generally) like the other kids.  As Mastercard says, that’s priceless.

At the beginning of the year, I met with my allergic daughter’s principal and the home ec. teacher to discuss how my daughter could take part in the Foods portion of home ec.  We ended up putting off the final details since her rotation for foods wasn’t happening until spring.

Now we’re scrambling because she is scheduled to start home ec. classes shortly so principal, teacher, parents and child are meeting next week.  I am torn with what to do.  My liberal side wants to have my child be able to partake in the classes and feels that special needs can and should be accommodated.  My conservative side says not to.  My child wants to participate but isn’t sure that she’ll feel safe enough to eat the food that she creates due to the potential of cross contamination from other classes in there.  I don’t know if we’ll be able to overcome the cross contamination or comfort issues.

I know that if she participates but then doesn’t feel comfortable eating the food, she’ll hold it together at school but will completely fall apart at home due to the unfairness of watching everybody else eat their delicious creations; and rightly so.  Her art teacher said he’d love to have her back in art during the food portion (she’d then do sewing with the rest of the class) and she is happy to know that she’s got an alternative she loves.

So… do we  work hard to make the entire room allergy friendly and she feels safe OR do we work hard to make the entire room allergy friendly and she’s still not comfortable?  Does she eat the food or doesn’t she?  Does she do the food portion at all?

A friend once told me that parenting doesn’t get easier as children grow up, it’s just different and she was right.  I no longer have to worry about my daughter putting something in her mouth like I did when she was an allergic toddler but now the emotional and social ramifications of segregating are a much bigger part of the picture.