Some of you are probably hoping to avoid the whole back to school mindset for a little while longer but I have to say that it’s been on my mind for a while. That’s because Megan is heading off to high school next year for grade 10. What compounds the normal food allergy issues is that it is a self-directed school where students work through modules and may have different schedules from each other.
This means that Megan is not attending her regular feeder high school but a magnet school where children come from all over the school district. For the first time, she will be without her regular posse of friends who have been very protective of Megan and her allergies. Further, as a self-directed school, there are not set lunch hours so we’ve already been told that kids eat everywhere and that food allergens may be difficult to monitor. The school itself is in a rural setting, about half an hour from our home by highway.
Statistically speaking, teenagers are at a higher risk of anaphylaxis than younger children. Throw in the regular teenage desire to not be different (which is often amplified for food allergic teens) and an assumption by adults that food allergic teens need to start becoming more responsible for their own safety and you can get a recipe for disaster. This is what worries me despite the fact that we know we’ve trained our child well. It’s still no guarantee, as many parents who have lost their teen allergic children can attest.
I’m not trying to be a scare monger but I’m finding this change really difficult. Even more so than when we moved to our new home here on Vancouver Island or when Megan went to junior high. Perhaps it’s a lack of control that I’m feeling, especially since it won’t be easy to just drop into the school and be as involved as I have been in the past.
On the bright side, we had to fill out a new food allergy form this summer to send into the school so I see that our school district’s food allergy policies are being followed. Megan’s epi pens are up to date and her alert bracelet is in good order. We informed the school as to her food allergies in the spring and we have another meeting at the end of August before school starts in September so we’re certainly doing all of the right things.
I’m not sure what the alternative is: home schooling, move to Antarctica or the biosphere, buy a teen size plastic bubble? We’d all be driven nuts in short order but maybe I’d sleep a little better at night.
Did you know that this week is Food Allergy Awareness Week? Because of this, you may find that your inbox is inundated by information about the prevalence of food allergy, the latest in treating food allergies and more.
I like to think of this week as an opportunity to review how we handle food allergies in our family and to fight against getting complacent. I’ve found over the years that it can be easy to get complacent without realizing it, especially when you’ve been doing everything right and you haven’t had any emergencies.
So think of this as an annual reminder to review your approach to food allergies, just like we use the time change to upgrade our smoke detector batteries. Here are my 3 Rs for Food Allergies as follows:
REMIND your family and your child’s caregivers about the signs of anaphylaxis
REFRESH your skills and those caring for your allergic family member for using the epi-pen and;
RESOLVE to educate more people about the very real and growing threat of food allergies
Simple, right? It’s time to get started right now!
One of the many food allergy research projects being funded right now is a Chinese Herbal Formula. In the last several years, it has been quite well publicized, especially since the Food Allergy Initiative raised a significant amount of money to provide a research grant to the project.
It looks like that money has paid off as peanut allergic mice who were given the formula have shown no peanut anaphylaxis compared to the control group. It appears that the formula was successful for up to 6 months. It is very promising news and now the research can enter phase 2; human trials for those with peanut, tree nut, sesame, fish and shellfish allergies.
To read more, see this link: http://www.faiusa.org/?page=Chinese_Herbal_Formula_to_Enter_Phase2_Trial
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.
It’s been one year since we were in the ambulance and to the hospital with Megan’s allergic reaction to kiwi. When I mentioned it to her on Saturday (the exact anniversary date), she was dismayed. In her eyes, remembering the date was the last thing she wanted to think about since she has no desire to ever go through that again.
Believe me, I have absolutely no desire to go through that again either. It was the first time she had a reaction in 9 years, the first time she was without us during a reaction, the first time she had to call 911 and the first time she had to self-inject the epi-pen. And not only did we need to deal with the medical emergency with her, we had to emotionally deal with her older sister who was traumatized by the incident and our friend’s son who had offered our daughter the drink that Megan reacted to even though it wasn’t his fault.
As much as I want to follow Megan’s advice and forget about that last reaction, I can’t, nor do I feel I should. I feel that we had gotten complacent because we had been so careful for so long and that was part of the reason why the reaction occurred. It’s not that we started cutting corners like eating food products that had “may contain” on them or that we stopped checking out ingredients in the grocery store.
The complacency was more about thinking that our “safe” places (as my girlfriend’s house where the reaction occurred normally is), were absolute and that all items provided in those safe places didn’t need another check. A simple check of the Koala brand lemonade spritzer would have quickly revealed that it was a kiwi-lemonade drink. But that didn’t happen.
So I need to remember and also climb down off of my high horse. Our allergist had been surprised that despite Megan’s extremely high test numbers, we had not had a reaction for so long. I wore it like a badge of honour (see how good I am with managing the food allergies). Now, I think that diligence is absolutely necessary but sometimes it’s also about being lucky.
So Rob and I are doing our best to manage the complacency that can creep back in when you don’t even know it. We will continue to remind our children, all family members and others that come in contact with our allergic child. But I’ll also cross my fingers and toes plus pick all of the four leaf clovers that I can find. Whatever it takes to get us through another year.
Researchers at National Jewish Health released a study in the Journal of Pediatrics on October 29 that says that many people are mistakenly avoiding foods that they believe their children are allergic to or believe is affecting eczema in their child.
Part of the problem is the difficulty in diagnosing food allergies. It turns out that a combination of patient history (including family history and previous anaphylactic attacks), skin tests, blood immunoassays and food challenges have to be assessed before a truly definitive diagnosis of food allergy can be applied. However, in practice, patients do not always go through these as part of the diagnostic process.
Add to that the fears of the food allergic and their parents, such as my child’s strong aversion to a food challenge, and you get many people who are avoiding foods unneccessarily. Check out the link to the study to see how many study participants were able to add foods back into their diets: http://www.sciencedaily.com/releases/2010/11/101104171350.htm
It’s bad enough that we need to convince people in our lives that food allergies besides peanut can create life threatening reactions too. But what happens when even allergy researchers believe that certain food allergies are not as serious? Read more »
I had a friend who had an anaphylactic reaction to MRI dye last Monday. In for an MRI to determine answers for a health issue, she had never before had an anaphylactic reaction to anything and had no food allergies. Her only previous reaction to anything was a very swollen leg last year after a bee sting.
The scary part to me is what happened when she told the technician she was feeling funny and hit the panic button. To be fair, MRIs and CAT scans are rather tight spaces and more than one patient has been known to have panic attacks so this was how she was initially treated. A doctor was called in who took her vitals which appeared to be fine so she was led through breathing exercises to “calm down”. When she began to have difficulty talking due to a swelling throat and tongue, they then noticed that her back was covered in hives. This is when she asked, “Can’t you give me something to stop this?” Read more »
On Friday night our daughter had her first food allergic reaction in 9 years. It was also the first time she self injected and the first time she had a reaction at a friend’s without an adult present. Her big sister also experienced the first time she was present at a reaction that she remembers. And it was the first time I was out and received a frantic phone call about a reaction.
All in all, a lot of firsts that I would rather have done without. While we have learned a lot from the incident including phoning 911 before phoning Mom and that all of the training that we’d done was successful, the fear box has been opened. You know, the one you stuff all of your allergic parent fears into so that you can lead a somewhat normal life? Read more »