Talking Allergies

We are lucky that here in BC the public health nurses are responsible for training the schools, so when the Bill passes , that is one thing we will not have to deal with.

In case anyone wants to read the actual bill, it's now here:

http://www.allergicliving.com/features.asp?copy_id=41

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Allergic to soy, peanut, shellfish, penicillin

During our meeting with the Assist Dep Min of Education last Wed, someone mentioned that the United States are introducing laws for anaphylaxis. Does anyone know anything about this? I was going to reference it in my letter to Shirley Bond, did a little looking online and only found information about states introducing legislation that allows students to carry asthma inhalers and epi-pens. That's it. Unless I find more I'm not using it.

Speaking of an Alberta update. Again, while looking around the net I found a document called "Alberta School Boards Association Strategic Plan Implementation Process Document 2006 - 2009". If I knew how to add the link I'd do it. I think I just googled Alberta anaphylaxis. "Strategic Priority" A. Service to All School Boards: A-1.3 references anaphlyaxis policy and procedures for responding to individuals with severe allergies. "Progress" comments (which we know): a consultant was hired and an advisory committee established. A number of meetings have been held to review research and other documents. My concern is that the document is dated for up to 2009.

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6 year old son ana to peanuts, cashews, asthma, eczema
Almost 3 year old daughter, not tested yet
Husband, lucky guy with no allergies
Self, trees, weeds & grass girl, cats, dogs, chemical sensitive, eczma & now peanuts, fish, shellfish & penicillin

Does anyone know anyone who would help us with this who lives in live in Langley, BC?

If so, please private message me.

We found someone who lives in Fort Langley/Aldergrove. Thank you so much for all the support. There are meetings with MLA's happening - meetings and letters are the most effective way of getting our message out.

David Cubberley's assistant told Yvonne that we still need to keep sending messages and e-mails to all MLA's - NDP and Liberal.

I will ask on the Kids With Food Allergies (KWFA) forum.

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

Just an update and hopefully we can get more support and more letters written!

This is from David Cubberley's office:

"Todate the office has received 67 emails. We'll need many many more if we're to put the needed pressure on to Minister Bond to do the right thing."

"We are not sure when the bill will come up for second reading. All we can do is give you notice when it does, but these things can often get decided at the spur of the moment, or dropped at the spur of the moment.

That being said, at this point, given the government's position with their "task-force," it is unlikely the bill even get to second reading. For the bill to proceed to second reading it will take a majority vote, dependent on the government members. All I can say is make sure they get the message that you want it passed and we will see what happens when it comes up."

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Son-anaphylaxis to peanuts, allergic to soy, peas, beans, tree nuts, cats, trees, grass & mold. Asthmatic due to colds & allergies.

Daughter-anaphylactic to kiwi fruit, allergic to soy, dairy, trees, grass, cats & dust

Here's what I found on the FAAN website:

Schools

What's New?

]NJ Governor Jon Corzine has signed into P.L.2007,c.57 (S79/A961). This important new law calls on the NJ Dept of Ed to create food allergy management guidelines for schools, and calls on school districts to develop food allergy policies based on the Dept of Ed guidance. The new law also clarifies the procedures by which students can carry prescribed epinephrine at school, as well as school staff members becoming trained to administer epinephrine when the school nurse is not immediately available. [/quote]
Statewide Guidelines for Schools
Statewide guidelines to help schools manage students with food allergies have recently been published in Connecticut (2006) and Tennessee (2007), while a similar document is expected soon in Vermont and New Jersey. These states are following the lead set by Massachusetts, which published its statewide guidance document in the fall of 2002.

Currently, a number of states are also considering legislation calling for the creation of statewide guidelines: Arizona (HB 2201), Iowa (SB 167), Maryland (HB 957), Michigan (SB 36), New York (S 298 / AB 405), and Pennsylvania (SB 374). Bear in mind that FAAN offers various resources to help schools manage students with food allergy, including the FAAN School Guidelines, and FAAN's School Food Allergy Program.

Students Carrying Prescribed Epinephrine at School

Ohio recently joined the growing list of states to adopt new laws or regulations allowing students, with parental and physician authorization, to carry prescribed epinephrine at school.

Currently, similar legislation is being considered in Washington, DC (B 92), Oregon (SB 533), and New York (AB 3921). A bill in Connecticut (AB 68) would allow children to carry their prescribed epinephrine on the school bus.


Currently, the majority of states have laws/regulations in place that allow students to possess (and potentially self-administer) their prescribed epinephrine during the school day, provided that certain conditions (such as parental, physician, school nurse, and local school board consent) are met. Such a policy helps assure that life-saving epinephrine will be quickly accessible during an anaphylactic emergency. The states are:

Massachusetts (1993)
New Jersey (1997)
Rhode Island (1998)
Indiana (2001)
New Hampshire and Delaware (2003)
California, Hawaii, Iowa, Maine, Michigan, Minnesota, and West Virginia (2004)
Alaska, Arizona, Arkansas, Colorado, Florida, Kansas, Maryland, Montana, Nevada, New Mexico, North Carolina, North Dakota, South Carolina, Tennessee, Virginia, and Washington (2005)
Illinois, Missouri, Nebraska, Ohio and Texas (2006)


If your state is not on this list, it doesn't necessarily mean that students cannot carry their epinephrine at school. It only means that there is no statewide law or regulation specifically allowing it. However, allowing kids to carry certain prescribed medications is becoming more and more common and is considered by many to be good practice provided that certain safeguards are in place. As a result, your local school may, in fact, allow it. Check with your school nurse and/or your school principal.

Other Legislative Efforts

Missouri recently enacted a new law that allows school nurses to keep auto-injectable epinephrine on hand for any student believed to be having an anaphylactic reaction.

Most states have Good Samaritan laws, which generally protect individuals from liability who render emergency assistance in good faith, with no expectation of payment, and who hand the patient over to appropriate medical personnel (such as EMTs or a school nurse) as soon as possible. Some states, however, have recently enacted Good Samaritan laws that specifically refer to epinephrine.

A Connecticut law allows camps, day-care centers, and before/after-school programs to train an employee in epinephrine administration, upon the written request of a parent/guardian, and extends Good Samaritan protection to these individuals in the event that they administer epinephrine during an allergic emergency.

A Rhode Island law extends Good Samaritan protection to school bus drivers and school bus monitors who administer epinephrine.

A Wisconsin law applies not only to bus operators but also to any school employee or volunteer.

A recently enacted law in Arizona protects individuals, including school personnel, who administer epinephrine.



Illinois, Michigan, Maine, and New Hampshire have recently enacted laws that help assure that epinephrine is readily accessible to children attending recreational camps.


School Lunch Guidelines

The United States Department of Agriculture (USDA), the federal body that oversees the national school lunch program, has a guidance document entitled Accommodating Children with Special Dietary Needs. In this document, the USDA recommends that children with life-threatening food allergies be given a safe substitute meal, based upon instructions from the child's physician.

Schools and the Law

It is generally accepted that children with life-threatening food allergies are considered disabled under federal civil rights laws, such as Section 504 of the Rehabilitation Act (Section 504) and the Americans with Disabilities Act (ADA). This is because a severe food allergy can substantially limit various major life activities, such as eating, breathing, and caring for oneself.

Section 504 applies to institutions that receive federal financial assistance. All public schools, and many private schools, receive federal money; as a result, Section 504 is commonly utilized to safeguard food-allergic children at school. Section 504 is overseen by the U.S. Department of Education’s Office for Civil Rights.

The ADA, however, typically applies to institutions that are privately run, such as private child-care centers, preschools, and private schools that do not receive any federal assistance. The ADA is overseen by the U.S. Department of Justice.

Under these laws, schools must address the health and safety needs of the disabled child, and must provide accommodations to ensure that the child participates fully and equally in all normal facets of the school day, such as classroom activities, field trips, and eating in the cafeteria. Generally, these issues are addressed in a written management plan, developed by key school personnel with input from the child’s physician and parents. Sometimes, the written management plan takes the form of an Individualized Health Care Plan (IHP), recommended by the National Association of School Nurses.








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Carley's death took the wind out of my sails, and I am so so sorry for her and her family.

The tragedy highlights the need for Legislation, and everyone here is continuing to work very hard in spite of how sad we feel. In fact, we are working harder because of our sadness.

Our children's death's are preventable through education and awareness. We must make sure that everyone has access to the information that can save their lives, and we must make sure that people realize that just because they are teens does not mean they are able to self-protect.

We will update you soon on what is occuring, in the meantime, please continue to support Bill M210.

Epi-Man and Epi-Man Jr. have created a poster that you can download from www.epi-man.com . Just click on the link at the bottom to go to the BC web page that they have created with the theme "BC Needs Some Heroes and Some Angels".

We also borrowed Ana Wigger's Alberta angel for another poster in case anyone prefers that.

I'll be honest though - I think we need heroes more than we need angels.

We need everyday heroes who will take the time to send emails and letters.

We need elected heroes to do the right thing and vote for this law.

We need heroes at the Ministry of Education to show the foresight and leadership necessary to make sure this law comes to pass.

K.

P.S. Gwen - I stole your ingenious instructions on how to write to all the MLAs.

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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

Oh, Pam, we can't both be sittin' in the water. . . but I am afraid I am.

I haven't even been able to post here, I have been so wrecked. Carley's school is just down the street from us, a middle school that is in our catchment. I have spoken -- some of them for hours -- to the people who were interviewed on tv. It was even my own principal who said as an official statement for the school district that she worried about 'rumour control' in the schools. What about what kids were feeling, grieving and how safe they felt? It is just too much.

And it is too much because it happened the day after our legislation was tabled, the day after hearing a man talk at a news conference about what it is like to lose a child this way, and to cry in public because you could feel his pain. . . and wonder how he could be so brave to be there at all. It is all so backwards, like we predicted it. And it is heartbreaking because the people in charge just don't seem to care, or at least they don't care enough to say so publicly. I feel shame.

I am really starting to lose faith, to feel a bit broken down. And I can't help but feel responsible for not having the guts to 'out' the people who need to know they MUST do more or more kids will die a senseless, preventable death. I know in my brain that this didn't happen at school and it isn't anyone's 'fault' -- but Carley's death is just all way too close to home and she doesn't have to die on school property for me to grieve and be upset that we haven't done all we need to do.

I will take a break this weekend. I have to.

Please support our bill. Please tell them we need to do more. Please tell your friends and family we need them, too.

Caroline

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son anaphylactic to peanuts

Caroline & Pam -

I can only imagine how you are feeling, and I wish I could give you all a big hug.

Now is the time for people who don't live in BC and who are slightly removed from the tragedy to make an effort. We are a community and when some of us are down - like our friends in BC right now - the rest of us must continue on for them.

I am in the midst of emailing all the MLAs (using Gwen's very clever technique for using the same message again and again).

Here is the message I am sending. I hope it helps. Anyone who wants to borrow parts of it is free to do so.

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Dear --- -

I am the mother of two young school-aged boys named **** and ****. Both of them have life-threatening food allergies. If they eat food to which they are allergic and don't get epinephrine in time, they could die. That is a fact. That is why they follow many extra safety rules with regards to food and carry their EpiPens with them at all times when away from home.

I do not live in British Columbia, but there are thousands of families like mine who do. 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. A law to protect anaphylactic students could ensure that the answer to all of these questions would be YES.

My children have even more imagination than they do allergies (which is saying something), and they have created two food allergy super heroes named Epi-Man and Epi-Man Jr. These heroes work very hard to help allergic children, but they cannot do it all. Sometimes they need the help of grownups like you - grownups with the power to do the right thing.

Please help them do their job by voting for the Anaphylactic Student Protection Act, 2007 (Bill M-210).

Please be a hero. You could save a life.

Regards,

Karen Eck
- Proud Mom to Epi-Man & Epi-Man Jr.
- Moderator of the Allergic Living "Talking Allergies" forum
- Volunteer Leader of the Ottawa Anaphylaxis Support Group
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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

I agree! When death happens after all of your hard work to avoid just such a situation it causes feelings of sadness and anger yes, but also a sense of impotence. But, we are not impotent.

I have written to Shirley Bond, Minister of Education; Gordon Campbell, Premier and David Cubberley, NDP Critic for Education. I will do as you have Karen and draft a letter of personal appeal to each MLA.

Right now, many people are suffering. Carley's parents and extended family, her friends and classmates, her teachers even the people who work at that food court. In a broader picture each one of us with a life threatening allergy or with a child who has life threatening allergies can't help but place our child in that situation and it is a terrifying prospect.

No one meant for this tragedy to happen but...it was hardly an accident. It could have been prevented.

Has anyone concidered a candlelight vigile? Would that help people to express their sadness and frustration?

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb

I couldn't agree more. Let's take those few minutes and write something, anything, it doesn't have to be much. Every parent deserves to feel what we feel here in Ontario because of Sabrina's Law. Every person's voice counts. Let's make it happen, province by province!

I received an email from Anaphylaxis Canada about supporting Bill M210 and in it they made it real easy for us:

For Non-BC Residents: Show your support by emailing:

- Premiere, Gordon Campbell: gordon.campbell.mla@leg.bc.ca

- Hon. Shirley Bond, Minister of Education: shirley.bond.mla@leg.bc.ca

- David Cubberley: david.cubberley.mla@leg.bc.ca

My heart is just broken for Carley's parents.
My prayers are with them, and with you Caroline, and Pam and everyone else working to support change in BC right now.
Sending a letter is such a small, easy thing to do, and may seem inconsequential...but there is strength in numbers. So here's my letter too:

Dear_____,

Although I am not a BC resident, I would like to voice my support for the Anaphylactic Student Protection Act, Bill M210.
I am the mother of 2 school age boys, who are both anaphylactic to eggs and peanuts. This means that we have to be scrupulously vigilant at every moment about what they eat, and even what they touch in order to avoid a life threatening allergic reaction. Imagine sending them off to school each morning, into an environment where they will encounter their allergens, and into the care of others who may not be thoroughly educated about how to recognize the signs of anaphylaxis, or how to administer life saving epinephrine injections.
Without laws protecting our allergic children, each child is at the mercy of the knowledge, willingness and sympathy of their particular principal/teacher. Some of us get lucky and have school administrators who are willing to work to create a safe, positive environment for severely allergic children, but many others have to struggle and fight every day just to have rudimentary safety measures provided for their children. As the number of children with severe allergies increases, and without strong laws in place, schools are ticking time bombs for more anaphylactic reactions.
Please support Bill M-210 to prevent more unnecessary deaths.
Thank you.

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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

I've just put together an e-mail to all my friends& family urging them to send a letter or e-mail of support.
I've had tears falling on my keyboard all morning here at work as I read and think about Carley. I'm thinking that I may put together a letter and have co-workers sign it to snail mail in. It would be easy to get them to all sign in support of this. They are awake of my allergies and how serious a matter this is.

I'm off to my parents on the mainland for the long weekend. Will share all this news with them as they are teachers. My step-dad has used me as an example to other teachers who did not understand what the big deal was. This is just a part of why we need bill M-210.

Janaya in Victoria