Talking Allergies

Hello everyone -

Well, the meetings went ok. Not great, but fine.

This morning, the principal, school nurse, my husband and I went through the anaphylaxis action plan, step by step. The principal read through them pretty quickly, but I made her back her up a few times to review some points. The major one was "working together to provide an allergy safe eating area for the student." It was then that I asked the school nurse if she knew of any other schools that allowed the allergen to go in the clasroom where there was an anaphlyactic child. She couldn't really answer that, and I felt a discomfort in the room. I also asked if decisions like that were up to the interpretation of each principal, and she started to say something until the principal interupted her and said it was adhering to the policy to do so. I will continue to investigate this part of the policy by calling other schools. The principal also noted on this point that the terminology for schools is now "allergy aware" rather than "allergy safe" or "allergy free" as they can not guarantee that there is no allergen (and therefor complete safety for the child, at least how I see it ) but schools can work to raise awareness.

The one good thing is that my husband came. He reiterated that the anaphylaxis policy is very broad, covers a number of health issues, and is open to interpretation. We clearly stated that we were both uncomfortable with the fact that our child is in a classroom that has peanuts and that there is limited supervision during lunch time. We did sign off on the form, though, because it says that we have read the policy more than we agree to absolutely every point on the form. I also told the principal we were going to continue to talk with other schools and the associate superintendent with regards to the different interpretation of the policy when it comes to food allergies. It was more of a prickly meeting than one all warm and fuzzy, but, hey, I am not surprised.

I also addressed the Parent Advisory Council tonight. There were fewer new faces than I expected. My husband joined me at that meeting, too. I chose to read the Health Canada advisory that is in a post on this forum. My husband then woke up (the only BAD thing was that my husband was there, lol) and showed everyone the belt my son wears, and the epi pen. He didn't have much to say, so I filled in a bit. As were reviewing information that a number of other parents have heard before, there were no questions....and I felt just the slightest hint of allergy information fatigue. I also thanked all the parents for their help with this last year, but. . . I felt I could have had a more enthusiastic presentation.

I really feel tired. Among other things, tomorrow I have a set time to speak my neighbour who is a principal at a school in another district, and I am going to ask her advice about dealing with a principal who is by the book and . . .difficult. Any advice you may have is also appreciated -- I have received so much, so thank you again.

thanks for reading this,
Caroline

_________________
son anaphylactic to peanuts

Caroline, you did a great job!
It is emotionally exhausting. It is also physically exhausting for me because I tend to get no sleep the night before these meetings as I keep thinking about it. I hope you had a better sleep last night.
Parents may feel some allergy fatigue from us discissing it. They may hear the message 4-5 times each school year. They are the lucky ones, we live it. Don't appologise to anyone for boring them; you are trying to keep your chis safe and potentially save their life. Hopefully, it is sticking and they are understanding about cross-contamination.

_________________
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

It's funny that she say this given that she knows that she's not only not guaranteeing that there isn't any of your son's allergen -- she's permitting it. Anyway, she can call it an "allergy aware" or "allergy safe" classroom (instead of "allergy free") and still ban peanuts / nuts - one doesn't preclude the other.
I can imagine how draining all of this feels for you but you're doing a great job - who else could better advocate for your son than you and your husband. Keep on going! I'm hoping for you that your investigation into other school's policies gives you some good ammunition.

Since she likes semantics so much, tell her that you understand they can never guarantee "allergy-free", but that a ban would greatly help, and then you can call it "allergy-reduced" or "risk-reduced" and this way, she will have done her part to minimize the risk and you won't hold her personnally responsible if your child has a reaction. You have to "speak her language".

Another solution is to send a letter to the parents directly to make them aware of the risk. You have to phrase it carefully as to not ask for a complete ban, as the principal doesn't want that, but perhaps the parents will be sensitive enough to "get it" and not send peanut products. This is a temporary solution until you talk to the superintendent and I strongly feel that you have to take this step and go higher up.

I know it feels like an uphill battle, but it's worth it!!

_________________
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

When I speak to groups (mostly teachers), I often preface my comments with something like this...
Some of the information I present will not be new. That's good! The correct way to administer an epipen and the signs and symptoms of anaphylaxis should be knowledge that is very familiar to all. In an emergency situation everyone will need to know what to do immediately. Minutes count with an anaphylactic reaction. Even at home we review our information and epipen poster regularly to make sure that we know what to do.

I think it helps with allergy fatigue. Good luck with your work. Have you asked about the legal issues of putting your child in a dangerous setting with minimal supervision. Sometimes the threat of lawsuit will wake up ignorant people if the personal health issue is not effective. In general, most schools here in my county both public and Catholic are nut free and parents generally accept it.
Kate

_________________
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

Just thought I would add this. Our board has almost completed our new anaphylaxis policy. I was able to participate in the committee working on it. It was a long process but I am very pleased with the result. We were very fortunate to have the assistance of Marilyn Allen from Anaphylaxis Canada. Anyways.... here is an excerpt from our policy:

The school’s duty is to provide a safe environment for all students.
The School Prevention and Management Anaphylaxis Plan shall fulfil their obligations by: sharing information and creating awareness; developing reasonable procedures for avoidance of potentially anaphylactic situations; and executing appropriate emergency procedures.
While recognizing the parent’s rights to food choices for their child, most parents acknowledge the right to life and safety as greater and will support procedures which protect the allergic child.

I have to say that I am proud of our board. But of course the work is not done. Now we have to implement the policy. Keep up the fight.

_________________
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

Kate -- I think the avoidance part of the policy is wha tis missing at my school. I have some hope, though -- check out what BC principals are talking about at my post: http://www.allergicliving.com/forum/viewtopic.php?t=1403. There is link in that post to the policy from Surrey which does have the three A's: Awareness, Avoidance and Action.
Caroline

_________________
son anaphylactic to peanuts

Caroline,
You did a great job. You must be exhausted! It is so stressful on many different levels. Keep up the good work!
When I read about your discussions with the school principal, I can't help but wonder what her understanding of anaphylaxis is. Does she know the symptoms? In my experience, once people understand what happens to a person during anaphylaxis, most seem very willing to comply with no-nuts requests. I don't get her resistance. (If she is so afraid to make a simple request of other parents, maybe this is not a good job-match for her.)
And when she says she is 'adhering to the policy'...does she really believe that policy is going to protect her if something should happen to an allergic child in her school? I would guess that lame policy is not going to protect her, because she is actually creating a dangerous environment.
I don't recall...have you put your requests in writing to her? Put everything in writing.

Good for you for initiating change in your school. You should be very proud of the work you've done. Your child has a right to be SAFE so he can learn, like every other child in Canada.

Keep us posted...looking forward to your discussions with the next level.

_________________
6-yr old son: anaphylactic to peanuts; asthma
1-yr old daughter: No known allergies

My husband and I have been going through the same thing at my sons school. They are not as supportive as we thought they would be. What they want is for us to bring him home for lunch. What that will solve I don't know. The way I see it if the other students are eating peanuts or nuts in the school at lunch they are contaminating the school anyway. Which is what we are trying to avoid in the first place so what is the difference if he stays or goes home the nuts are still there. We need better laws and policies in place to protect all our kids with allergies.

_________________
Lisa
6 year old son anaphylacticallergy to peanut and treenut
also asthma & eczema

Lisa- Are you in Ontario? You can site Bill 3 aka Sabrina's Law. The school is to have a plan to reduce the risk of exposure to allergen caustative agents. What is their plan?

_________________
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

See http://www.allergicliving.com/feature.asp?feature=41 for more details about Sabrina's Law. It's worth knowing it inside out - you'll need it in your negotiations with the school.

K.

_________________
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