Talking Allergies

I just sent my letter too. I tried to highlight the difference it has made in Ontario with the help of Karen's letter also. Pam and Caroline - I am thinking of you and all close to Carley.

Dear Mr. Campbell,

I am the mother of a young child with multiple life-threatening allergies. **** is five years old and if she eats anything with milk, eggs, or peanuts and doesn't get epinephrine in time, she could die. That is a fact. Imagine the stress and worry our family went through preparing **** and her school for junior kindergarten last year. There are often many worries for parents sending their children to kindergarten for the first time. For us, our main concern was whether the school could keep our child alive each day. Fortunately for us we live in Ontario. Four months prior to ****’s first day of school, Sabrina’s Law was passed. This legislation has created a safer school environment for *** and all children with life-threatening allergies in Ontario.

There are thousands of families like mine who live in British Columbia. Every day we send our children off to school and hope that if an allergic emergency arises, the teachers and other staff will know what to do. But will they? Have they been trained to recognize the sometimes subtle signs of an allergic reaction - a reaction that can quickly turn deadly? Have they been trained to react appropriately and give the EpiPen and then call 911? Could they have saved a child like Carley Kohnen if she had had her allergic reaction on the school premises?

At the moment, I suspect the answer to these questions tends to be NO at most BC schools. At my daughter’s school, I feel quite confident now that the answer to all of these questions would be YES. BC children with life-threatening allergies deserve the same protection that Ontario children now have.

I urge you to pass the Anaphylactic Student Protection Act, 2007 (Bill M-210). This legislation will save a life. I am completely convinced of that fact after seeing the difference that Sabrina’s Law has made here in Ontario.

Yours sincerely,

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11 year old daughter -- lives with life-threatening allergies to milk, eggs and peanuts; seasonal allergies (birch, maple, ragweed); pet allergies; asthma; and eczema
9 year old son - no allergies

If you go to www.gov.bc.ca, there is a section in the lower left of the page for Government Resources. You can choose to look for individual Ministry links (which should also have contact info on them specific to that Ministry) under the Government block or you can look under Resources --> BC Government Directory which will take you to:

http://www.dir.gov.bc.ca/

The Ministry list can be found here:

http://www.gov.bc.ca/bvprd/bc/channel.d ... %2Fhome.do

As I am sure you are all aware, you can get farther with honey than you can with vinegar so be succint, professional and honest. (my $0.02 anyway)

The PO box adress listed is the mailing address.
Every gov employee has both a physical address and then a PO box for mail which is delivered (daily I believe). I only know this because my work sells lots of furniture to the gov and we always have to look up the po box for the invoice.
I've not gotten my letters sent off but will in the next day or 2.
Janaya

I just wanted to thank everybody so much for all the support that we have recieved in the last week or so. If this Legislation does not go through it will not be because people all across Canada have not shown enough support. One thing that is clear to me after reading countless letters from concerned parents is that we are all facing similar situations in all our regions and we really need to follow Ontario's lead in having Sabrina's Law to protect our children during school hours.

I have come to feel like everyone here on this forum is like family (mostly because I am spending so much time on this that I do not pay any attention to my real family ), but truly I mean that.

I think things are going really well. I am not a very good judge because I have never been a part of anything like this, but it seems good so far. We are trying to meet with as many MLA's as possible, and get as much medial attention on LTA's as possible. Everyone is very open and sympathetic, there definitely seems to be a shift in perception from the way things were a few years ago.

Caroline's husband made a forum that is meant to function to keep us efficient and able to divvy up jobs, like a working check list, as our e-mail situation was getting unmanageable; we had over 400 e-mails each to respond to last week. (But that's a good thing, we're not complaining . The object is to provide information that people may need for this process only- sample letters, why we want legislation not a task force, things like that, etc.

It is in no way meant to replicate anything that happens here on the Allergic Living Forum. We will continue to post on the AL forum, as interesting things come up, but a lot of what is going on now is stuff like editting letters and brainstorming other groups that might help us .

Gwen has created a truly wonderful thing in this forum, and the great thing is that it works across all of Canada, and it serves to unify us all. We really need that, and I am really grateful.

The second reading will probably be a Monday during the 1st or 2nd week of May. That will be interesting...

Thanks for the update, Pam!

Caroline2 - I just saw your PM from a few days ago (not sure why I didn't get notified - likely my crappy Internet service provider) and am looking into your request.

K.

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

Great update, Pam!! Yes, the other website is just temporary, just for this bill and letter writing info and stuff - we love it here at AL, with all the national support and are not going anywhere else to form an online support group.

And, Karen, I just sent you a reply to your pm. If you don't receive it soon, please send me an email so I can have your address and I will resend it that way (I believe you have access to it as moderator).

Caroline

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son anaphylactic to peanuts

I'd written Ms. Bond a short letter earlier, decided to send her a longer version, which I finally sent off today...

Dear Ms. Bond,

I am writing to in support of Bill M 210, the Anaphylactic Student Protection Act. While this is a private member’s bill, I ask that you and your government consider putting aside partisanship to pass a law that is of vital importance.

I speak from some knowledge on the issue of anaphylaxis and the schools. I’m the editor of a magazine for people with food and environmental allergies and personally live with the risk of anaphylaxis (to shellfish, peanut and soy). Having life-threatening allergies as an adult in the workplace is challenging, but the dangers are considerably greater for children and teens where they spend their days: their schools.

As you know, young Carley Kohnen recently died of anaphylaxis in Victoria. Teenagers are by far the most vulnerable group to fatality from food allergic reactions. An Ontario study published in 2000 reviewed 20 deaths from reactions to peanuts and tree nuts. Most were girls aged 14 and 15. A new U.S. study has just been published. Of 31 food allergy deaths, again, most were teenagers. And most were not carrying their epinephrine auto-injectors.

It’s not news that teenagers will take chances, and often won’t listen to their parents. But what is new is the heightened risk of anaphylaxis: there has been a doubling of food allergies since the ’90s. This means far more teenagers and far more younger children who are at risk. They need to learn to self-protect, but they also need to live in a community where that protection is nurtured through awareness and education.

I know that many of the school boards in B.C. have anaphylaxis guidelines, and that you are putting together a task force to examine anaphylaxis policy rather than legislation. With respect, that is not the route to take. Here’s why:

- Policy is not enough when children’s lives may be at stake. Policies don’t carry the weight of law; they are not consistently applied. One school may be terrific at following an anaphylaxis policy, while the principal at another school doesn’t place the same emphasis on allergy prevention and emergency readiness. If a family moves from a school that follows anaphylaxis policy to the letter to one where policy is less well (or not well) applied, it becomes the parents’ job to educate and cajole the administration to try to reduce the level of allergy risk. What will happen if the family of the child at risk isn’t all that educated about allergy, or perhaps not as able as communicators? Should that family’s allergic child receive less protection in one school than he would in another?

- Consider the speed with which anaphylaxis can strike, and how quickly students who have died of it have begun struggling to breathe. A child at risk of this condition is often otherwise perfectly healthy. But expose him to his allergen and seconds can mean the difference of life and death. Ask yourself: Can you be sure that the training on EpiPen auto-injectors is good enough in B.C. schools that any principal or teacher faced with an anaphylaxing child would have the confidence and the know-how to administer the EpiPen immediately? The CSACI, the national allergists’ body, says that most anaphylaxis deaths occur because the EpiPen wasn’t given at all or because it was given too late. There isn’t time for missteps, there may not be time to wait for an ambulance. With a law, rather than policy, that knowledge will be there. It will be mandated.

- Further to that last point. An Ontario allergist surveyed a group of 100 teachers a few years ago about anaphylaxis, and then asked them to administer an EpiPen Trainer without reading the instructions. (Seventy-six per cent had had previous instruction.) Only 12 per cent passed. The rest either didn’t know one end from the other, would have applied it into their hands or would have pulled it out before the medication could be released. The point is: using an EpiPen is very easy; but using it correctly in a crisis when you’ve never used one before is something else entirely. Only adequate training will bring about cool-headed, correct administration.

Before you opt for policy, Bill M 210 deserves your close scrutiny. It is reasonable law based on risk reduction strategies rather than outright food bans. It would allow teachers, principals, coaches and bus drivers the peace of mind of knowing what they are doing should they have to administer an EpiPen. It would also protect them from liability. This law, as you know, is based on Sabrina’s Law in Ontario. Sabrina’s Law is working, it is protecting children. It may not be perfect – there are no guarantees with anaphylaxis – but it is so much better than the patchwork of policies that preceded it.

Ms. Bond, it is within your power to make a difference for these students. The parent groups lobbying the B.C. government for this legislation are not asking for the moon. In fact, they really ask for so little: the safety of their children.

Thank you for your time and consideration.

Sincerely,

Gwen Smith
Editor
Allergic Living magazine

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Allergic to soy, peanut, shellfish, penicillin

As the mother of Carley's very best friend, I just want to thank you so much for all that you are doing. I sit here with tears, wondering if only I could have...
Everything you are doing makes a difference.

Gwen, that is such an excellent letter. Thank you.

It is so true that "Policies don’t carry the weight of law; they are not consistently applied."

Sometimes policies aren't even communicated.

I live in Quebec and my school board has an excellent anaphylaxis policy. The problem is that the many people do not know it exists, including the people at the board who are responsible for enforcing it, not to mention the school principals and the teachers. Forget about most of the parents. My friend found out about it when she was given a badly photocopied version from her school nurse. You'd think I'd found a state secret the way it was handled when I called the school board to confirm that the policy was still valid. "Where did you get that?" was one of the first questions I was asked.

My own school nurse (who is an otherwise excellent ally) doesn't even feel that the parents of allergic chldren should be given a copy of the policy, which completely boggles my mind. She feels that it is too much info for them. I guess she is basing this notion on the fact that some parents don't do much to keep their kids safe, and she has to deal with these parents on a regular basis. For me, it's like telling me that I am supposed to do my job without a job description. How can I do my part to keep my child safe -- how can anyone do their part -- if they don't know what that entails??

It has taken my friend, a very dedicated mom, several years to get the school board to even put the policy on their website. It is finally going to be done. My oldest son is in grade 3 now... we were told there was no policy when he started kindergarten... found out about the policy when he was almost finished grade 1, and it had been "in effect" for several year at that point. No one at our school had ever seen it (except for the nurse) until I uncovered it.

So yes, even the best policies are useless without the weight of law. My experience is living proof of that.

K.

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

Paula, Thank you for posting here. I know all of us at this forum send our love and support for Carley's friends. It's just tragic to lose such a lovely young friend to anaphylaxis.

I hope none of them or you feels guilty in any about what has happened. I just hope that we can do justice to Carley's memory by helping to protect other kids at school, to encourage greater awareness of anaphylaxis among teachers and students alike. If you feel like sending along a letter to Shirley Bond, the education minister, in support of this legislation, that would be great.

The address is: Shirley.Bond.MLA@leg.bc.ca and we're cc'ing David Cubberley, the education critic at: david.cubberley.mla@leg.bc.ca

No pressure, if you feel like it. Again, thanks for writing.

Karen, Thanks for your comments. Your experience just once again drives home why policy just isn't enough. I wish we could get the B.C. and Alta. govts to understand what parents have to go through without a law.

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Allergic to soy, peanut, shellfish, penicillin

Here is the letter that I just sent to Shirley Bond, cc'ing David Cubberley and the Premier:

Dear Ms Bond:

I have received an email from the Director of Healthy Schools, on behalf of the BC Ministries of Education and Health, regarding your government’s plans to convene a policy advisory group with regards to anaphylaxis in BC schools.

With respect, I do not believe that a policy of any kind is enough. I believe that a law is required. Policies don’t carry the weight of law. Where policies exist, they are often not consistently applied.

I live in Quebec and my school board has an excellent anaphylaxis policy. The problem is that the many people do not know it exists, including the board employees responsible for enforcing it, school principals, and teachers.

The only people who seem to know it exists are a smattering of concerned parents who managed to discover the policy, and the school nurses – and neither of these groups has the power to ensure that a given school complies with the policy if the principal decides that he/she does not feel it is important enough to be complied with. This happened to our family when my oldest child started school. The principal at the time did not believe that life-threatening food allergies were important, and the entire school followed her lead. You cannot imagine the stress that our family felt sending our child to a school where people thought that we were hysterical “first time” parents because we wanted them to help reduce the risks to our child and know how to administer an EpiPen in order to save our child’s life, should the need arise.

Community leaders – starting with the provincial government – must show that they believe life-threatening allergies are important enough to warrant mandatory education, training, and communication for others in the community to follow suit. Trust me, it will take a law to persuade some schools to comply.

In the meantime, how many families with children and teens at risk are experiencing incredible and unnecessary stress? How many children and teens are at risk of dying because the school community does not know how to reduce the risk to these kids, or does not know what to do in case of an emergency?

Yes, some schools are excellent in how they approach anaphylaxis. Others, however, are not. Don’t all children and teens in BC deserve the same level of attention and care?

I urge you to show leadership in this matter and bypass the policy advisory group. A law is needed, and I believe that BC children and teens whose lives are at risk from anaphylaxis deserve such a law.

Regards,

...

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

Karen,

That's a powerful letter that really makes the case - thank you so much writing it.

These are exactly the arguments Ms. Bond needs to hear - because in theory, policy can sound as if it will be enough.

If anyone else has stories of policy or guidelines not being implemented or having shortcomings - please do write them up and send along to Ms. Bond and Mr. Cubberley.

The time to make this case really is now.

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Allergic to soy, peanut, shellfish, penicillin