Talking Allergies

I feel like I have come down off of a high -- that meeting on Friday took a lot out of me! I am so happy that BCMom was able to be there, too, for a it helped not to be the Only One!

But speaking of which. . . soon the Vancouver Island Health Authority will be contacting us to work with them to help develop more allergy awareness within their workshops. They are able to have TEN parents on this committee, and we would really like to have that many parent reps. I really think there is a lack of comprehension -- even in the health community -- about the stress that exists in families with kids w/ anaphylaxis. If we can get out there and work with them on real issues, I think we will make a difference and even help them get their messages across. They need our point of view, and have asked for it -- let's be there for them!

So if anyone in the Victoria area is availlable to meet on a Friday now and then, please send me a private message. As I understand it, we will start with email discussions pretty soon.

Caroline2

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son anaphylactic to peanuts

We have 3 meetings set up for Fridays in December and into January (I assume we won't get them done in Dec) in order to work on allergy awareness programs in our schools. YEAH!

The Health Authority is willing to have a few more parents in the Victoria area join us for these meetings -- please send me a message if you would like to join me and BCMom.

Caroline2
ps Pam, I will give you a phone call really soon!

OMG, I do not know where to start

- The Health Authority now says they only want 4 -5 parents all together to work with them.
- We are not to have an email group -- they will go through one person, no 'distribution list' messages.
- The consensus statement "Anaphylaxis in Schools and Other Settings" is NOT what they want to work from, but rather their terms of reference. They don't think it is the document the works best for them.
- They want to make sure these meetings discuss general public awareness ONLY - no debates allowed and scare tactics ('a child could die') will not be tolerated. They do not want to talk about any 'bans' on any action or foods because they will not say that to other parents. (Food choice = Life here in Victoria)
- We will only be going over newsletters and possibly information that the Chief Medical Officer will send to the newspaper and other media.

If we can't agree to all of this, they will cancel the meetings and we will have to find our support elsewhere.

Would you all support us to help protect the kids in Victoria? I am devastated that they are being like this. Maybe I just need to calm down, but they certainly told me where to go today. I thought they were working for me?? Or at least WITH me???

Caroline2

Ok, what is their problem?
According to this article, they won an "excellence" rating in safe food handling at hospitals and long term care facilities but...what about the schools?
http://www.phsa.ca/News/MediaCentre/Nov ... +audit.htm


Have you concidered trying to fight using the BC Human Rights Codes?
We might have to determine whether or not a food allergy is a physical disabilty.

http://www.qp.gov.bc.ca/statreg/stat/H/96210_01.htm




Bottom line, why are they slamming the door in your face? Why do they not want to create a safe school system? No where in the Code does it say "the right to eat peanutbutter.". Why are the putting peanutbutter ahead of the children of British Columbia?

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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

Why are they refusing to use the consensus statement? It has such a positive and reasonable tone. In one part it states that good anaphylaxis policies start with sound medical info, reasonable expectations and respect. I can't imagine why it would not be used. I can somewhat understand the concern about bans. It gets backs. Maybe if the focus was on risk reduction strategies. How frustrating for you. I think the legal route may be the way to go. Children with life threatening allergies have the right to safely attend public schools. Other disabilities need accommodations. This is not about the right to food. It is about the right to attend public school. Schools need to create a safe environment for all children.

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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

When arguing discrimination you need to go through the provincial government.
http://www.cdn-hr-reporter.ca/index.cfm ... odation#10
Under the Duty to Accomidate, a public service can use as a defence duty to accomidate to the pint of hardship.

By the way, I searched peanutbutter and failed to find that human right.

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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 wonder if you could go about it in a round about way, by first getting food allergies recognized as an "official" disability. Then, with that status, they can't discriminate against allergic children.

Just my two cents.

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15 year old - asthmatic, allergic to cats, dogs, horses, waiting to be "officially" diagnosed for anaphylaxis
12 year old - asthmatic, allergic to tree pollen and mold, OAS
Husband - Allergic to amoxycillin
Self - Allergic to housework only

My daughters school does not have a program in place but at least my daughters teacher understands about my daughters allergy and is ready and willing to help. Any help i could give you i gladly will. All children need to be protected and looked after keeping peanut butter out of schools will not harm any children there are many other cheaper and healthier items to send to school with kids. I am sorry about the problems you are now facing after you thought they were ready to help you.

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Daughter Ana to Cashews, Pistachios

Please let us know what we can do to help.

Thanks for all your support. I think our next steps are to regroup and realize they are working from their terms. Despite their somewhat combative tone, we are still in the door. I really don't want these meetings canceled so we will go to the first meeting with an open mind, couple of points to get across and then hope for the best.

I do think the long-term solution will to be to get life-threatening allergies recognized as a medical disability with funding attached. Really, the admin and the health authority have to look at the bottom line on how to meet the requirements of all children -- they don't want to see anyone hurt but they need to manage the money that is available. As our district is not going to restrict any foods or other allergens in the school enviroment, we need to look at ways to get more supervision when there is a higher likelihood of an exposure. If it's a food allergy we are talking about, then we need complete adult supervision at lunchtime. There is no way that this change can magically happen without funding, so this designation as a disability might be the long-term way to go. It doesn't make this journey any easier, so your support is greatly greatly appreciated.

Caroline2
ps I don't know why the consensus statement is not used, but I really can't demand they use it. . . Does anyone have any theories why this document might not work? Does anyone else have a district that doesn't agree with it?

Would it help to send examples of schools/districts who do ask parents not to send the allergen? And perhaps statements that even though schools are asking, they are not demanding, but it is not causing problems and there is very little backlash?

What about other school districts policies?

I've been thinking about the problem you have with the powers that be not wanting to communicate with other parents re: having a child with LTA's in a school.

I think I am like most of the population in that I would be appalled if any action of mine caused injury to anyone else, especially a child. I would be very angry if I injured someone unintentionally and then found out that information had been withheld from me about that person, and if I had had that information I could have acted a certain way to prevent the injury from occurring.

What about that angle...you understand that you cannot have a ban, because that implies 100% allergen-free blah, blah, blah, and you realize that you cannot impose restrictions on other people's food choices at this point (I bet that someday it turns into a court case), BUT by not informing the entire school community the administration is taking away their ability to behave in a cooperative manner, and it might mean that someone feels remorse for the rest of their lives over something they could have prevented had they been given all the information.

So rather than asking for food restrictions, you are asking that everyone be given the information needed to make an informed decision regarding this issue.

You could make signage that supports this concept.

eg: Allergy Aware School
Please be aware that individuals in this building suffer from life threatening allergy to
____________. We respectfully ask for you cooperation in keeping all our students and staff safe.



Even though this signage does not spell out that no ________ is allowed, I bet most people would get it.

Then what we should do is ask for a public awareness campaign through the Health Board's, so that everyone learns about LTA's and that is not all left to the schools to deal with. Considering that 6% of our kids now have LTA's, it is certainly time.

Caroline,

I wondered how things were progressing on the Victoria school issue. Have you had any more meetings?

Well, we have actually had some really good success lately! I would have posted earlier but . . . the season has gotten away from me. . . you know how it goes. . .

Anyway, our first meeting was mid December and we all 'followed the rules' and got a lot of work done. Both the health authority and the school district were there to work on ways to get allergy information out to the wider community. This is so important in many ways, and it is not only for our young students. As children with allergies get older, the likelihood of having an in-class info session on allergies for the students is just not as 'doable'. Not only do kids with allergies want to fit in, and this type of info session points them out as different from their peers, but the school culture is that older kids don't always have a home room -- they are all over the school. Having more generalized information may find a way to reach *everyone* not just those students and staff who deal with the student with allergies. This approach makes allergies an issue about health and safety, not about how one person is different. [And, incidentally, this info to the general public cannot come too soon for our school. A grade 7 lunch monitor, when speaking with my son and his friend who seems so alike, thought it would be funny to suggest that he 'spread peanut butter on both of them to see who would get sick'. Comments like that are JUST not acceptable. . . but they happen out of ignorance. That must change and education can only help.]

We also worked on and agreed to most of the points of the letter to parents whose child shares an elementary classroom with a student with allergies. Again, it was empowering to feel heard AND to see policy change as a result of our conversations.

The next two meetings will be expanding to include more school districts on Vancouver Island as well as include more health professionals who specialize in allergies and nutrition. BCMom and I are gathering up names of interested parents, and we hope to have more at the next meeting. This is all very good news and I am relieved beyond belief. We are getting somewhere!!

Caroline
(who is very happy!)
ps OH!! AND BC Health is now looking at the general consensus statement. The school board is not yet using the document, but the associate superintendent wanted to know more so I gave him a copy. (This came from their own work -- not our suggestions -- but we will take it and celebrate anyway.)
ps2 Where is the happy dance emoticon?

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son anaphylactic to peanuts

Thanks for the update Caroline2. That is very inspiring.

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