Talking Allergies

It's also quite possible other parents haven't asked about the lunch room supervision. Most people assume that a school will do what is required to keep the children safe, and unless/until something happens they don't ask about it.

Have you spoken to other parents, Caroline?

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self: allergy to sesame seeds and peanuts
3 sons each with at least one of the following allergies: peniciilin, sulfa-based antibiotic, latex, insect bites/stings

After training last year, a parent of an upper grade lunch monitor did come to me to say she was not comfortable with her child being 'in charge' of my son while he eats his lunch. I asked her to go into the principal to express her concerns, and I don't know what happened after that but for the fact her daughter no longer had to monitor in my son's classroom! This parent is also an aide to high school kids with disabilities, so she would have said something to the fact that this is a dangerous situation. I will follow up with her as she is a personal friend -- but her daughter has moved on to high school herself, so it won't be an issue that she is asked to be a monitor in my son's school.

As for the rest of the parents, I think there is just acceptance to the way things are. I think you are right to say there will not be change until something happens. I do know that when there was an accidental tripping of the fire alarm on the second day of school, the lunch monitors did lead the kids outside and, as the whole thing with the adult duties was not completely clarified yet, really were responsible for that happenning.

And, yes, I did spend hours dreaming about ways to fix this. I feel outnumbered!

Caroline

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son anaphylactic to peanuts

Caroline2,
I've been following your posts about the struggles you've been having with your school, and I just wanted to say that I admire the fact that you're willing to work to effect change. Too many parents just accept the way things are, whether they think it's in their child's best interest or not. The more moms and dads that speak up, the better it will be for everyone's children. And it can be so hard! My school is really trying to be cooperative, but I still find myself feeling a little intimidated or overwhelmed at times. So I can't imagine how difficult it must be coping with all the negativity that you have been.
I just wanted to put my 2 cents in, and say I'm routing for you, and your son, and all the other children that will be made safer by any progress you can make.
And I am absolutely gobsmacked that anyone would think it's OK for children to monitor other children at lunchtime, even without an allergy involved.

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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

When my older kids were in elementary I fought about an unsafe crossing area in back of the school -- where my children crossed. I finally managed to get the police involved but never heard anything back from them. I called the police station and found out that the officer had sent a letter to the principal advising that it was extremely dangerous (an accident waiting to happen) and made some suggestions to her. (The principal had buried the letter, intentionally, for various reasons.) I asked for a copy of the letter -- then I presented it at the parent council meeting.

What the school finally broke down and did was put grade 7 & 8 students working as crossing guards. I couldn't believe it. They were trained by the police, but I still felt it was ridiculous. I refused to allow my children to *work* as crossing guards for two reasons: 1. I wasn't letting them risk their lives at a dangerous place; 2. if anything happened on *their watch* they would have to live with that guilt.

I believe in giving kids responsibilities, but not more then they could reasonably be able to cope with.

Anna

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self: allergy to sesame seeds and peanuts
3 sons each with at least one of the following allergies: peniciilin, sulfa-based antibiotic, latex, insect bites/stings

Maybe this has already been mentioned but see also the Communities section of the new national anaphylaxis guidelines (you could even buy a copy for your school) at

http://www.allergysafecommunities.ca/de ... atsubid=34

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

Did anyone hear my sigh? The one of RELIEF??

I have had a break through with the superintendent's office. I spoke with a different sup, the one who helped write the anaphylaxis policy for Victoria, and he really seemed to listen to me. After I told him my story, he agreed with me that we need to involve the community more in this policy, both through awareness but also by specifying the need for avoidance. He also said that when the community is made thoroughly aware, then they become sensitive to the need to avoid the allergen because they 'get' that they don't want to isolate a friend because of a medical condition (yes, I almost cried when he said that!). AND he said that there really really needs to be a closer look at the way kids are supervised at lunchtime. He knows principals won't be happy if that is brought up (due to staffing concerns, not because they don't care) , but he acknowledged that there are more and more classrooms with anaphylactic children -- they need to figure this out in a way that prevents a tragedy, not after one happens.

He said that the anaphylactic policy will be discussed at the next management meeting, and he appreciated my dogged thoughtful and thorough insistence that this matter be looked into. It is September, and the office is very busy, but he reiterated to me that they have been talking a lot about the policy -- including with the health authority!! -- and how they might need to make changes to make it a better policy.

I am writing a letter to the superintendents, my principal and the health nurse explaining why my husband and I want this policy change. If anyone is interested in helping me make this the strongest document possible, please PM me for a copy. Or I can post it here if you don't mind me taking up more bandwidth!

I see a small glimmer. . . anyone else?
Caroline

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son anaphylactic to peanuts

Caroline2, I'm so happy for you. I think this person might be the ally you were looking for. Don't forget to give him a gift or card of thanks at some point!



That is such a good way to put it. You might want to put that in your letter. Maybe even ask him if you can quote him. That way you show that you are allies and get his very good point across to the others. I'm sure a lot of us were thinking the same thing - why does it take a tragedy to spur people to action???

And by all means, if you want to post the draft of your letter here, go ahead. That's what we're here for - to help.

Anyway, hope you get some sleep tonight!

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

Here is the letter.

Dear Associate Superintendents, Principal, and Health Nurse –

This letter restates our discomfort expressed regarding the anaphylaxis plan for our 7-year-old son, at [his] Elementary School.

On February 14, 2006, a student in our son’s classroom put peanut butter on his arm. This seemingly innocent act was not witnessed by an adult, as there was not one continuously in the room during lunchtime. Luckily, though, this situation was quickly brought to the staff’s attention as he has a life-threatening allergy to peanuts.

The response to this was handled well by the staff and administration. We were notified quickly, and his condition was thoroughly reported to us. He spoke of a “funny feeling in his throat” and had a hive or two, but it was by no means a full anaphylactic reaction to this exposure. As we didn’t have hihs secondary medication, Benadryl, at hand, we picked him up from school and gave him the medicine at home. We monitored him for the rest of the day, and there were no more ill effects but for listening to him complain that he missed his class’s Valentine’s Day party that afternoon. We were all fortunate that it ended as it did.

This frightening incident has highlighted a number of issues when dealing with his allergy. We have since tightened the protocol of what we should do if there is another exposure. With District 61’s Anaphylaxis Policy 5141, we all have clarified roles and know that we each have a part to play in keeping him safe at school. There have been many conversations about this issue, and for that we thank all of you. However, despite this work, we ultimately do not have a different situation in the classroom at lunchtime.

It must be noted that, although we were not perfect, the policy was being followed before this incident on February 14th. The teachers and the administration were aware of his peanut allergy, and we had agreed on a place to store the epinephrine injector. Parents of other students had been informed of the allergy, and we spoke to the children about it, too. We all knew what to look for if he came in contact with peanut products. We even had separate eating areas in the classroom for him and those who had nut products. We thought we were doing everything we could. Because of this incident, though, we learned that we all needed to improve the emergency response in case of an exposure; we have made necessary changes. However, as his parents, we do not think we have lessened the likelihood that there might be another exposure at lunchtime. Although the “reaction” plan of the policy has improved, the equally as important “prevention” aspect of the plan is no stronger than last year, and we have the same situation as before the exposure: He still eats his lunch with children who have peanut products in a room without continuous adult supervision. We reiterate that this is not a safe situation for our anaphylactic son, as we learned on February 14th, and we have a real fear that it can easily happen again if we do not change the situation at lunchtime.

We have an understanding that there are 3 adult supervisors in the school, monitoring eating time for over 300 students in 16 different classrooms. This cannot be considered direct supervision of our child’s class. And, although there are two older children in the class while he eats, we cannot expect these children to be responsible for an anaphylactic child. We also know that having the allergen so close at hand provides opportunities for testing limits and even bullying our son due to his allergy. Seconds count should he come into contact with peanuts or peanut products – we need more from the policy. We are therefore respectfully requesting that either there is to be complete adult supervision at lunchtime, and/or peanut products are kept out of the classroom all together.

Please let us know when you receive this letter. As you are aware, we ultimately want to strengthen the prevention part of the anaphylaxis policy in place for all Victoria schools, and we are dedicated to working with you to make this happen in the near future.

Thank you for your time,
Sincerely,



Concerned Parents

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son anaphylactic to peanuts

Just a quick note to say how happy I am that you have found someone within the system who is receptive to change!
It shows that when faced with a closed door we need to knock at another until someone finally opens up.
I will read your letter this evening.
Please do post here as it makes it easier for us to go back and re-read and possibly borrow ideas when writing our own letters.

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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

What a relief to have found someone who listens. Just think of how many other families will ( hopefully) not have this stress in their lives thanks to your vigilance on this subject.

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daughter: 6 years tree nuts, peanuts

I think it's a great letter. I especially like the fact that you are saying, yes, we're sort of on top of things for reaction (to an emergency), but PREVENTION is where we want to focus. That is sooo important.

Well done. I hope it has the effect you are looking for.

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

So happy you have found someone who will listen! I am so happy for you and your family. It sounds like the board knows they have to update the policy, and a little reminder nudge from you may be what is needed to get this on the top of their to-do list.

I think your letter is great. Congratulations on coming so far.

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

I dropped of my letters -- with some minor edits -- and now I have to let go a little. I also included the Surrey, BC, policy (you can find it at http://www.sd36.bc.ca/Board/Policies/Po ... 209610.pdf ). I like this one because it has the Three As: Awareness, Avoidance and Action. Right now my school district's policy has been so focused on preparedness and awareness that I don't think they have understood the importance of avoidance. The Surrey policy with the Allergy and Asthma Information Association handout on ananphylaxis ought to get my point across. At least that is my goal, and if they don't hear me, I am sending it up the next level until I send it to the premier!

As for me, I have been so stressed about this situation that I have to believe that they are going to talk about them at their next meeting. I do feel, though, we have given them notice that if anything should happen in this 'known' lunchtime set up, that they will have a liability issue on their hands. I don't like going the legal route, but I guess I have to play the way they look at it....

Thanks for all your support. I have really depended on you all, as I don't think I have a friend left (w/out an allergic kid) who can listen to me rant about this anymore! Sigh.

Caroline

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son anaphylactic to peanuts

I just went to the GP to renew the referal to the allergist. The GP was SHOCKED and flabbergasted that there were peanuts in the room with my son. She dropped everything and had someone type a letter that said in reference to my son,


and she signed the letter. (her emphasis with the bold and underlines).

So, what did I do?



And I told her the grief I was getting from the administration. She listened a bit then put her hand on my arm and said that I was NOT neurotic and that I should seriously consider getting a lawyer. They were putting my son in danger's way and they should know more about anaphlyaxis and allergies by now.







I am not crazy??!

Caroline

Yay!!!
(the yay is in reference to her definitive support, not because you're not crazy -- )