Talking Allergies

I recently sent an e-mail to the vice-principal of another school welcoming her to our school next year as the new principal and congratulating her on her promotion.
I requested that she take a moment before the start of school to review the school anaphylaxic policy with my husband and I as our school board has not complied with Bill 3 and has the principal create the school policy and not the school board. Yes I have brought this to their attention but ... deaf ears. My soon to be next battle I suppose.

Anyway, here is part of her response... am I dreaming?

" I completely sympathize with your fear for your daughter, R...'s, safety. I, too, am an anaphylactic (tree nuts), as is my husband (crustaceans). We have recently discovered that our daughter, who will be 4 in September and starting school, seems to have inherited some of my nut allergies. It is very frightening indeed!"



While I don't wish this condition on anyone, I can't believe that she might understand and be sympathetic! Is it too much to hope for?

Oh, just thought of something...what if she lurks on this forum?

Next year should prove interesting to say the least!

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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

Wow... Sounds like next year at school will be vastly different from the past two years.

I agree, I wouldn't wish LTFAs on anyone, but it certainly does help people "get it".

Way to go, as well, for being so proactive!

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

Susan, I hope all goes well. It sure seems to be a good start.

The principal at my son's school does not personally deal with food allergies as far as I know. However, in a previous school she had a child go into ana. shock in the school yard, and she made a lot of changes in her schools after that happened. When Sabrina's Law was passed, there were no changes made at this school because they were already doing things that aren't even mentioned in it. It doesn't make it perfect -- but it's pleasant to have it taken seriously.

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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

I think half the battle is getting people to understand the seriousness of LTFA. It's great that that part of the equation is already worked out for you! Hope the other half works out just as well .

I will remain cautiously optimistic until I have met with her.
I can not let myself get to excited as I could not deal with the disappointment.
We all know that there are varying degrees of comfort with allergens and medications and for all I know she's very aware but she might be lax.
Time will tell, but it's a good start!

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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 am right there with you, Susan: cautiously optimistic that things will be better next school year.

My son is going to a new school in the fall where there is a much more understanding principal. We have our first official meeting on Tuesday and I hope to have much of my son's anaphylaxis plan 'sussed' out at this time. Like you, I don't know if I could handle a disappointment if this doesn't work out but I am encouraged by previous conversations that he does understand allergies a whole lot more than the principal at our current school.

On one hand it is scary to have to be so proactive; on another, it is just the reality of having a child with a LTA, isn't it. I have faith we will both find ourselves in better situations next year.

Caroline

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son anaphylactic to peanuts

Caroline 2-
Yes!

Good luck at your meeting toorrow, we will meet with our new Principal in the fall.

I am reading a book Why Courage Matters by John McCain and although much of it is US history and military (that is his field). Still some has to do with acts of courage all around us, where people draw the strength form and how to develop the capacity to act.

For all of the strength and courage that I may have, it pales in comparison to any 5 year old child who, aware of the consequences of mistaken bite and unable to read yet, takes that bite and trusts that the adult will be able to handle any resultant situation.
Would I be able to place my life in someone elses hands 3-6 times daily? I think that's what keeps me going.

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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

That is such an excellent point! I really admire both of my sons' courage. I often think that them being in a room full of kids eating snacks, must be equivalent to one of us lowering ourselves into one of those underwater cages to watch great white sharks. I mean, sure you would have the cage between you and the sharks, just like our children have their epi-pens, and anaphylaxis plans, but it would still be dangerous and terrifying.

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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 met my new principal and he was. . . pretty good. There are still some mighty strange practices that kinda freak me out. Things like:
- right now kids in this school don't carry their own EpiPens but rather they are in a 'tub' in a centralized room. Parents request this practice. The principal would prefer it if the kids wore their meds, so my son will start a fashion trend and wear his.
- the lunch thing is the same as in my current school: kids in eat classrooms without constant/consistent adult supervision and yes, even when there is a kid with food allergies, any food can come in. There will be the 'zone' that is cleaned up after lunch but this whole situation still gets my goat. Sigh. (There is just so much more work to do in my district in makes me near insane.....) And, incidentally, for the past few years in this school, the kids with the allergen in their food ate in a classroom across the hal.l This action was stopped -- and I would like to confirm this-- when a parent of one of the children sent across the hall complained. Honestly, and I know this sounds paranoid, but I am thinking it was more likely the district told him this wasn't proper policy. I might never know. . . but grrrrr....

At any rate, this principal is very willing to work with us, and is open to new ideas. He would like to meet again before school, and have all the paperwork in place for the first day, including signs on the classroom door. We will have his medical sheet all ready to go, including a current photo so staff can get to know who he is. Training on the EpiPen will be in week one or week two of school, but I will be coming in the first day of school to speak with the teacher. Oh, and I said I would like to put info in the first newsletter as well as say a blurb at the first PAC meeting and he was very cool with that. We will also be writing up emergency preparedness list that tells people step by step what should be done in the case of an exposure. I sure cannot complain about this willingness to work together; however, I guess what ultimately troubles me is that there needs to be a request by a parent for action before the policy actually comes into play. It's a good thing I am not afraid to advocate for my kiddo!

Sigh again...

Caroline

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son anaphylactic to peanuts

Caroline, all this heavy breathing after meeting the principal!
No seriously, my first thought was "it's too bad he's not proactive but at least he's reactive." When I read your post again I wonder if he has any back bone? Does he change any policy when a parent complains? The rule is Epi-Pens are in the tub in room #, except for your son's? Will the teachers remember? Will he change the rules again if another parent complains? I hope I'm wrong but I think you'll have to keep a careful eye on this school.
Sorry to say as well that I would be one of those parents who would complain if my 5 year old was removed from her class to eat lunch in another classroom with the other allergic students. I am all about safe integration. Lunch is as much a learning experience as any other part of the school experience. Our children are already forced to recognise their differences in so many ways. They can eat safely in the classroom if the school is willing to educate the staff & student body and supervise the activity.
Much of what we teach in terms of allergen avoidance dovetails with the public health departments good hygiene practices (proper handwashing, containing body fuids, not sharing eating utensils eyc.) I can't see why any school would not want to put these practices into play. I can only see that time and money play a part and our children's lives are worth the extra time and money.

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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

Susan, you raise a good point about only one child carrying their epi-pen. Caroline, I would like to suggest you have him carry one, but also have an extra in the "tub". My son's school insists on two at school -- the child carries one and an extra is in the office. That way, if it misfires, or gets forgotten, they have one there. (A good example was last year a child forgot their epi-pen and it wasn't noticed until he arrived wherever the class went on a field trip that day. The school couldn't contact parent, so the principal drove up in her car with the extra pen from the office.)

Also regarding training of staff -- at my son's school all staff have firstaid/CPR, but every year during the last week before school starts the principal goes over epi-pen use with them, as well as a list of which students carry them, whose class they are in, etc.

A few years ago when I brought my son's epi-pen in to the office I put it in a little baggy. I taped on his picture, and a paper with his name, room number, and what he's allergic to. The principal then requested this of other parents. It's not required, just requested. Some did it and some didn't.

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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

Yup -- we have two at school this year so next year we will put one in the tub.

I will continue to advocate for my son, and hope that this principal is not flip-floppy. Right now it is my sense is that there is a limited parent involvement in this school around the allergy issue. The way the policy is in my district is that it is parent lead - it's not a good one and it is truly my reason for fighting so hard for change in the district and the reason why I am all for legislation and doing all I possibly can to make sure it happens. But right now each and every school is different -- and principas are not required to do much beyond paperwork unless a parent requests the support of the school. Thus his agreed changes when I ask for them.

I must add -- and this is hard -- that I know he was briefed by my current principal (he mentioned it) and, to be honest, he might have been wary of this meeting while wanting to do all he could to support a new family coming into his school. I really want to go in fresh because I know that this can be worked out and I know we can work together to keep my child safe. I ended up as momma bear in our current school because I didn't feel heard -- and so I kept asking the questions until I got answers, and I think my current principal thought that inappropriate which is not what I intended. I didn't want to offend her, but nor could I drop the issue of my son's safety.

Oiy. It is an exhausting process but a necessary one.

Caroline

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son anaphylactic to peanuts

What is stopping the principal from creating a school policy that requires children to wear their EpiPen or Twinject? If I were in charge, that is what I would do.

... Okay, I have read all the other posts, so I guess we know why he's not creating the policy.

At least the positive part is that he is willing to work with you. That is really the most important part, in my opinion.

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

Caroline, Just catching up on your posts.

Previous principal thought you were a Momma Bear? Puhl-eeze! You may be persistent but you are always so polite about it. He or she is darn lucky that you are so considerate in your approach. Some of the lunch dealings you've had go through have been ridiculous. (I don't think I'll ever forget the 12-year-old lunch monitors!)

I like, though, that you're predisposed to give the new one a chance. Start the learning curve, at least this one appears to want to hear from you. Does he have a copy of Anaphylaxis in Schools & other Settings? If not, you may want to get him a copy, and highlight a couple of key points. That way, it's not you, the mom, making the points but leading allergists right across the country.

Just pulled my copy out: under Avoidance Strategies - No. 1 - Adult supervision of young children while eating is strongly recommended. (perhaps your son wouldn't qualify as that young, but still ...hello!)

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Allergic to soy, peanut, shellfish, penicillin