Talking Allergies

You're right - food allergies are not just with peanuts or shellfish, it's extensive and I know people who are anaphylactic to strawberries - and it's hard for people to believe that one can die from eating dairy or even a strawberry. But it's a reality, and it's challenging for our society to consciously become aware of this.

But it has to be done. Education, awareness and knowledge are key.

And I'm so happy that sharing my story has helped others.

Sabrina would feel good knowing that Sabrina's Law is in place to help protect other children.

We're going to try to get Sabrina's Law passed in Saskatchewan too!!!

Sara

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Sara S (Allergy Advocate)

Our next question is from Tina N, who writes:

I have one question, but before I ask, I would like to express my gratitude and heartfelt thanks to you for all of your efforts in bringing Sabrina's Law to fruition in Ontario. It means the world to me to know that there is a law to protect my nine year old son (severely allergic to peanuts, tree nuts and is asthmatic). Thank you.

My son attends a catholic school in Toronto. It's been difficult to get the school to understand how serious this issue is. My latest challenge has been, in particular, trying to work with the principal to ensure that the three elements of Sabrina's Law are put into place at the school. Many years ago (through researching on the internet) I prepared an emergency plan for my son and the principal is under the impression that this emergency plan is all that is required under Sabrina's law. My understanding is that there are three elements, one of which is for the principal to prepare a written individual pupil plan (which I believe is a different document than the Anaphylaxis Emergency Plan) for each anaphylactic child outlining allergy, monitoring and avoidance strategies as well as appropriate treatment. Please see below.

"Every school principal is required to develop and keep on file an individual plan for each pupil who has an anaphylactic allergy. Individual pupil plans must be consistent with Sabrina's Law and the School Board's Anaphylaxis Policy.

An individual pupil plan must include:

1. Details of the type of allergy, monitoring and avoidance strategies as well as appropriate treatment.
2. A readily accessible emergency procedure for the pupil, including emergency contact information.
A sample form called Anaphylaxis Emergency Plan (PDF) may be downloaded from www.allergysafecommunities.ca.
3. Storage for epinephrine auto-injectors, where necessary."

I have sent the above information to the principal last week and received a call back stating that he is at a loss as to what this individual pupil plan is (he apparently has received the Anaphylaxis Kit and E-Modules from the Ministry of Education). I believe he thinks the Anaphylaxis Emergency Plan and the Individual Pupil Plan are one in the same thing. Before I call him back, would you kindly confirm that the Individual Pupil Plan is a different and separate document from the Anaphylaxis Emergency Plan. Also, do you know were I could obtain a precedent, model or template of a individual pupil plan (with names omitted) that I and/or this principal can follow in order to create a plan for my son and, of course, for the other anaphylactic children in my son's school.

Your help is greatly appreciated.

Thank you.

Tina N.

I wrote to my ministers of health and eductaion as well as my MP. I just got the feeling that no one here really sees this as a priority. We are the fattest province in Canada...so I am thinking that has something to do with the fact that our schools are very centred around food, possibly more than other provinces.

I assumed that my daughters could go to school...come home for lunch, and food would not be that big an issue during class time. Boy was I wrong! Food for prizes, food for celebrations and food for any reason at all. They seemed more concerned with what candy my kids can eat...than how to avoid having allergens in the form of icecream bars and other junk during class time.

We really need laws here. I have not given up on helping to get laws passed, even if I have given up on trusting the schools with my girls. I am homeschooling (happily), but we know other kids with allergies who are not being treated well by their schools. So if anyone else from Saskatchewan is interested...I still am.

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DD age 9 1/2 -peanuts, nuts,
DD age 7 1/2 - milk, eggs, chicken, peanuts, treenuts, cats, dogs,
DS age 2 1/2
Husband- asthma, eggs, treenuts, fish, shellfish environmental
Self - penicillan, eurithromiacin, mild laytex allergy.

Hi Tina -

Thank you very much for your kinds words.

Karen and I both agree with you that the Anaphylaxis Emergency Plan is only one part of the Individual pupil plan. (It's too bad that they both use the word "plan".) You clearly spelled out in your email what the Individual pupil plan consists of - I feel that the text of Sabrina's law spells it out pretty clearly

Even the Explanatory note in Sabrina's Law says the same thing ( from http://www.ontla.on.ca/library/bills/381/3381.htm ):

"The individual plan for a pupil with an anaphylactic allergy must include details on the type of allergy, monitoring and avoidance strategies and appropriate treatment, a readily accessible emergency procedure for the pupil and storage for epinephrine auto-injectors, where necessary."

So I'm really not sure why the principal doesn't understand this.

Do you know what the school board's anaphylaxis policy says? Could you talk to your school board superintendent? If you feel you are not getting anywhere with your principal, you might have to contact his/her boss ... Sometimes that is the option you have to explore.

You might want to point your principal to the training that all school staff are supposed to have taken at http://www.eworkshop.on.ca/cfmx/edu/anaphylaxis/ as well.

Best of luck. And can you follow up on the forum and tell us how it goes?

Sara

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Sara S (Allergy Advocate)

Hi Saskmommyof2!

I would love for Sabrina's Law to be passed in Saskatchewan! Power in numbers!!

It's a tragedy that there are kids still at risk in the school system. That's why we need Sabrina's Law.

Until there's a cure, we need Sabrina's Law.

Sara

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Sara S (Allergy Advocate)

This next one is from ethansmom...

Just wondering if Sara could give some advice on dealing with resistance from school officials, (perhaps also discuss the barriers she encountered). Maybe discuss how she learned to "let go" little by little as Sabrina got older -- did she ever get comfortable letting Sabrina outside of her safe watch and "bubble"?

I also wanted to say a big "THANK YOU!" to Sara for her efforts in having "Sabrina's Law" passed. She's made my son's world that much safer for him. Thanks to her, I can breathe that much easier as I send him off to school next Sept., knowing I'll have a concrete law behind me while I advocate for my son's safety and best interests. She and her daughter have saved so many children's lives and given so many families peace of mind. She and her family will never be forgotten.

I hope you all have a Happy Thanksgiving!

ethansmom

I have to be honest, I was not treated very well by school officials during Sabrina's time at school with regards to her allerigies. They were great on other fronts, but I do not feel they understood anaphylaxis very well. That is why I am now such an advocate for education and awareness.

As for this question:



You can only do your best - they have to go out into the big world - and teach them to self-manage and to educate the people they are involved with. Sabrina dated and was about to experience her first kiss, when her boyfriend declined.... because he had just eaten buttered popcorn and felt it was too risky. These kids were 13 - so you see, talking about allergies is important, and it's helpful and even life-saving. Kids don't have to be ashamed of their allergies or about carrying their EpiPen.

I think it's sort of futuristic - carrying epinephrine! A lot of movies that I've seen recently have been introducing epinephrine into their plots lines. So maybe epi is becoming cool! (We can only hope.)

Happy Thanksgiving to you too! Have a safe meal.

Sara

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Sara S (Allergy Advocate)

Sara, thanks for doing this today.

Our family has a potential relocation to Winnipeg in the works, and I am concerned with finding the safest possible school environment for my sons (grade 1, anaphylactic to eggs and peanuts). So far we've been really lucky, although their current school is not peanut free (or egg of course) the principal and teachers have been cooperative as far as actively working to minimize risks, refreshing epipen training and making some changes in their existing policies at our request. What are the important questions to ask and things to look for when researching a new school?

Also is the ball rolling for bringing Sabrina's law to Manitoba?

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1 son allergic to eggs, peanuts, green peas, chick peas, lentils and tomatoes
(avoiding tree nuts and most other legumes too)
1 son allergic to eggs, and has outgrown peanuts
Both with many environmental allergies, asthma and eczema

Hi Twinmom -



Things I think you should look for...

1. Do they know what anaphylaxis is?
2. Does the school board have an anaphylaxis policy that the schools follow?
3. Does the school itself have an anaphylaxis policy that it follows? (Not just something on paper.)
4. If they don't, but you still like the school, are they willing to work with you to ensure that allergen avoidance and risk reduction can happe, that awareness/education can be promoted, and that a good emergency plan for your child(ren) can be put in place?

For me, those are the most important things.

As for Sabrina's Law in Manitoba, I don't actually know. The Talking Allergies forum is probably a good place to ask - maybe at the http://www.allergicliving.com/forum/viewforum.php?f=36 - Schools: Anaphylaxis laws forum.

Obviously I would LOVE for Sabrina's Law to exist in Manitoba.

Sara

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Sara S (Allergy Advocate)

It's just past 4 pm EDT, so we're going to have to wrap up.

We'll answer this last question, from Dory...

Do you think it’s realistic to hope for more Sabrina’s Laws across Canada? And do you think it can spread to the U.S.?

K.

Hi Tina,
it appears you are experiencing what I had experienced and that is a concern with the 'dissemination' of information. Despite the draft and interim policies on anaphylaxis in our province, this very valuable information was not reaching many teachers. That is why I think a policy is just a first step and that Sabrina's Law is needed. My experience as a teacher with other teachers regarding my daughter was that the extent of their knowledge is how to administer the Epi-pen and avoid eating a peanut. They are unaware of cross-contamination, in the school settings which may range from science projects, fund raising, bird/hamster food, face-painting spring fairs, etc., sharing resource/gym/computer equipment that may be contaminated with peanut residue etc. You may want to touch base with the CEO of education or the Minister to address your concern on the method in which this valuable info is delivered.
Donna

Absolutely!

It'll take hard work, and organized people, letters, patience... but I do think it can happen, and it's my life goal, right now.

My daughter was vibrant, creative, artistic, an avid reader, loved to draw... and she's with us as we work to bring this law across Canada and even the U.S. Maybe even Europe!

Next weekend I will be meeting with Americans and Canadians in Niagara Falls in a joint effort to start working on getting Sabrina's Law in other jurisdictions. And also to talk about anaphylaxis.

I've had so much fun this afternoon - I hope I'm invited again!

Take care, everyone, and be safe!!

Sara

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Sara S (Allergy Advocate)

Sara, thank you SO much for being here and for being such a great participant.

I know that all the forum members send you a big thank you as well - not just for today, but for all that you have done for allergic individuals in the past, and for what I know you will be doing in the future.

You've given a lot of us a voice and hope and the conviction that what we want for our kids - to be safe in school - is acceptable and attainable.

And thank you everyone for participating!

Happy Thanksgiving!!

Karen

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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

I'm not sure if we can still respond to this topic, but if so, I also wanted to add a huge THANK YOU to Sara for everything you've accomplished in bringing about this important law to Ontario in honour of your daughter Sabrina. It has made such an incredible difference to anaphylactic children attending public school in Ontario. I truly really admire everything you've done to make this happen. We are grateful to you, and we look forward to hearing more from you on the Allergic Living chat.

Julie

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14 yr old daughter: no health issues
11 yr old son: allergic to peanuts, tree nuts, eggs, fish, sesame, sunflower, mustard, poppy seeds, green peas, some fruits, instructed to avoid all other legumes (except soy & green beans), pollen, cats, horses

Thanks Julie -

I have passed your message on to Sara just in case she doesn't get a chance to look at the forum in the next few days. I know she's a bit busy right now.

Sara said that she'd love to do another chat some time, so hopefully we can make that happen.

Take care!

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