Talking Allergies

Hello,

I’m registering my son for school in September. I am worried. When I think of the task ahead I am overwhelmed – yet I would do anything and everything to keep my son safe.

My son Shannon is allergic to dairy, eggs, bananas and tree nuts. He also has asthma and he is very young; as a December boy he will be one of the youngest in his class. I have what I feel like is a long and complicated history with the school as my two older boys go there.

When my second son, Foster was 18m he was diagnosed with a peanut allergy. Ever since my first, Owen, started school I have been involved in the school and on the Parent Council. Long before Foster went to the school I was trying to raise awareness about allergies at the school and was advocating for change. There was a big blow-up when my oldest was ‘graduating’ from SK. An SK Graduation was planned and food would be served after the graduation. To make a very, very long story as short as I can this is what happened: I asked the school to buy nut-free cakes (which they were not doing before). The parent council was more than willing to pay for the cost difference but the teachers REALLY resisted. They were worried about it “opening a can of worms”, whatever that means.

Let’s just say that I’m not the kind of person to back down, especially when my kids’ safety is at stake. What happened next was a series of misunderstandings and miscommunications that led to the cancellation of all SK Graduations in the foreseeable future and a letter writing battle that went back and forth until a YEAR after the SK Graduation incident. Finally I met with the teacher involved, the principal (who was new to the school), a teacher union rep and the head of the Conflict Resolution Department from the School Board (TCDSB). We tried to sort everything out and put it behind us but to this day that teacher will not look at me, she’ll be standing right beside me and will do everything she can to avoid eye contact with me and she’ll walk right by me with her nose in the air.

Anyway, by this time we had learned that Foster had grown out of his peanut allergy but I remained committed to improving the allergy policies at the school. In the end the school agreed to always buy cakes from nut-free bakeries. (Yay! I felt like this was a HUGE victory.) Unfortunately, it also meant the cancellation of all food related activities in the school – that is except the ones the school felt like keeping. So they got rid of muffin days, no more birthday cakes for the kids, no more food or drink of any kind (even bottled water, for crying out loud) at events throughout the school year (for example, they used to give the kids bottled water and fresh fruits/veggies at the annual Halloween Dance).

There are some exceptions to the “no food” rule. They still have pizza days and they have an end of year bbq. At the end of year bbq students are required to have a permission form signed from parents or they cannot eat the food. The school also has a reading program once a month in the morning at which they serve coffee (for parents not the students, lol), bagels and juice. The grade 2s recently got to have a First Communion lunch at which the school served the gr. 2s pizza with a store bought cookie as an “exception” – because it is tradition. I also learned recently that one of the gr. 2 teachers gives out food rewards on a weekly basis (which supposedly is not allowed). The students are also not allowed to share or trade food (but it happens all the time – difficult to police, I know) and they’re not allowed to hand out treats at Halloween, Valentine’s day, Christmas, etc (but this also does happen). So what has really happened is the school has selectively cancelled food events which has only confused parents and upset the kids. I NEVER asked the school to do any of this, this all came out of me asking for the school to buy cakes from a nut free bakery.

I think what will end up happening when my MFA son Shannon starts school in September is that the school will not allow any exceptions in his class. In my mind this will result in the kids of other parents in Shannon’s class wishing that their kid wasn’t in his class while the rest of the school will silently be grateful that their kid is not in Shannon’s class (can you follow that, lol?). Because despite tradition, when Shannon is in Grade 2 I’m sure the school will NOT have a First Communion lunch in which pizza is served with a store bought cookie – and they will be the only grade 2 class in the history of the school that didn’t get the lunch.

I wish the school would be consistent!! Either cancel everything...or don’t, I can figure out a way to deal with it either way. But don’t be wishy-washy and don’t sit on the fence. It just confuses people.

I have met with the principal about Shannon starting in September but will have to save the details for another time; this post is already too long and I have to get ready for school pick-ups!

Thanks for reading my vent. I’d love to hear thoughts!
Amanda

_________________
DS 1: environmental allergies. DS 2: penicillin allergy, outgrew peanut allergy. DS 3: allergic to dairy, eggs, banana & tree nuts. DD: no allergies. DH: bee sting allergy, lactose intolerant. All have asthma. http://www.familynature.ca

Wow. I can see why you are concerned. Is this a public school? If it is, the school is legally required to comply with Bill 3 aka Sabrina's Law.

You can start by making sure that they understand that milk, egg and banana allergies are just as deadly as nut allergies. May people seem to have a hard time understanding that all of these food allergies can be deadly.

Can you talk with the Principal? Ask what their plans are to reduce the risk of exposure. Can you ask to not have your child in the classs of the teacher who won't speak to you?

Does your son wear an e-belt or some other type of auto-injector belt? If not, consider him starting this over the summer so it isn't something new in September.

Yes it can be overwhelming but identify your concerns, communicate them to the school, ask them to advise you of their plans, point out the gaps in safety and work towards a solution. You may find that your child is not the only one in that grade with a food allergy.

_________________
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

Oh that's not even the half of it <sigh>. I will post again later about what has happened so far this year.

Is it always this complicated?

Amanda

_________________
DS 1: environmental allergies. DS 2: penicillin allergy, outgrew peanut allergy. DS 3: allergic to dairy, eggs, banana & tree nuts. DD: no allergies. DH: bee sting allergy, lactose intolerant. All have asthma. http://www.familynature.ca

welcome
I can't even imagine what you have gone and are going through. I do want to say that your efforts are appreciated. I already am feeling anxious for when our son is of school age and he's only 20 months. The efforts taken by parents like yourself ARE making a difference even if they are slow to happen. School will be a safer place for my son because of it. In turn I hope that my participation regarding our school's allergy 'issues' will also help other parents.

_________________
DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish

I can't imagine having to deal with a school that is being so difficult. I don't know what I would do in your circumstance, and like you said, we haven't even heard the half of it.

I've only had minimal involvement with our school as my 4yr old daughter only starts Kindergarten this September. There was no anaphylaxis plan in place before, so I've had to create one. However, so far the principal has been really good, as well as the school nurse.

My problem now is that I've started feeling 'indebted' to people like parent volunteers because they have accommodated my child's allergies in certain situations. And now I'm in the middle of a messy situation regarding some school politics unrelated to allergies, and I feel like I have to tread lightly and not step on toes because I need these people to be considerate to my child regarding allergies.

Good luck going forward. I hope things improve for you at the school.

_________________
DD 2004 Allergy to peanuts, egg, sesame, and new: lentils and chick peas
DS 2006 Allergy to peanuts, tree nuts, milk, egg, kiwi fruit, eczema

Okay, here’s the more of what has happened (I copied some of this from a post I made in another allergy forum so forgive me if you'vre read this before!):

Near the end of last year I approached the principal to let her know that my son with MFA would be starting JK in September and I asked her when we should sit down and talk about it. She said in the new year. So I approached her again in January and asked when we should meet. She said in June. I told her that I wasn’t comfortable with that and she said “Oh of course, whatever you need to feel comfortable” so we met in February. DH didn’t come because he stayed home with the baby and because he just can’t handle these types of conversations. He just gets so angry and becomes confrontational. I try very, very hard to be calm and reasonable because I think it is much more likely that I’ll get results that way. So my sister came with me. My sister totally gets it.

My sister goes out of her way to make special treats for Shannon and understands the dangers of food allergies, cross contamination, “may contain”, etc. She is a great ally for me! She is also very cool and calm. She is close-by and is on the emergency contact list. My sister is also heavily involved in her kids’ school (not the same one) and has a friend at her school whose daughter has a peanut allergy so she knows what happens at her own school. It was very helpful to have her at the meeting.

Anyway, the meeting was so-so. I didn’t exactly come away from it feeling reassured. I’ll try to give the highlights...

I asked the principal if I could sit in at the anaphylaxis training and she said no. The training happens twice a year. The first is provided by The School Board (Toronto Catholic District School Board). I asked the principal if the training was in line with Anaphylaxis Canada's training and her response was, “I assume so.” so I'm not feeling reassured. The second refresher training is provided by the principal. This is the same person who didn't think that my son needed his epipen in the library (because there’s no food in the library), she also believed several other misconceptions and myths about anaphylaxis/allergies, all of which makes me feel uncomfortable with the idea of her providing the training. When I asked if I could be present during the training the principal was offended and said, “Would you want to be present for your doctor's training as well?” She also told me that teachers wouldn't be comfortable with a parent there and as such would be “afraid” to ask the “stupid” questions that one should be able to ask as this kind of training. When I pressed this issue a bit she got more offended and told me that teachers would flat out refuse to attend the training if I were there. She absolutely could not understand why I would want to be there.

Another big concern I have is with supply teachers. There seems to be a loophole when it comes to supply teachers and anaphylaxis training — since training happens at the school level it seems that supply teachers somehow fall through the cracks. I asked the principal if I could expect a phone call in the morning if there was going to be a supply, her response was “absolutely not!” I asked how my son's allergies would be communicated to a supply teacher. Her response was the individual plan (a simple one page document from Anaphylaxis Canada that goes in the teacher’s lesson book for the day). I told her this was not acceptable and that I would need to have a conversation with ANYONE who would be supervising my son. She did not have a response for this and I told her “This is why I wanted a meeting now (this was in February), so that we could work these things out. I don't expect an answer today; I just want you to start thinking about this now so that by the time September comes there is a plan in place that is acceptable to all of us.” So she said she'd think about it.

Another sticking point is that the kids are supervised by students during the teachers break (recess for the rest of the grades but the kindergartens stay inside). I told her that my son needs ADULT supervision at all times. She's working on this too. She told me to “hope for another special needs kid” in my son's class so that the class might be assigned an EA (Education Assistant). Allergies do not qualify as a “special need” and as such my son would not qualify for an EA. I think it's weird for me to “hope” for another special needs kid, don't you? One more thing about supply teachers; in the TCDSB's Anaphylaxis Policy it states that when a supply teacher comes in the principal must personally have a conversation with the supply teacher about any students at risk for anaphylaxis. I pointed this out to the principal (she had no idea) and she said, “Oh…well, that just won't happen.”

I'm submitting Shannon's registration paperwork on Monday, so we'll see what happens from there. In emails after the meeting she told me she had some "ideas" she was working on but she was very cryptic so I'm not quite sure what to think.

Thanks for your comments, I appreciate the support. If anyone has any suggestions, I'd love to hear them!

Amanda

_________________
DS 1: environmental allergies. DS 2: penicillin allergy, outgrew peanut allergy. DS 3: allergic to dairy, eggs, banana & tree nuts. DD: no allergies. DH: bee sting allergy, lactose intolerant. All have asthma. http://www.familynature.ca

Revised School Responsibilities - Sabrina’s Law Bill 3 - January 1st, 2006
An effective plan of action to meet this challenge of protecting students and staff should include the
following:
♦ principal to review Toronto Catholic District School Board Anaphylaxis Protocol/Guidelines with
school staff semi annually or when new staff are assigned.
♦ principal to meet with parents of students diagnosed with Anaphylaxis upon registration at the school
and/or upon diagnosis of Anaphylaxis. Individual file and plan created.


http://www.tcdsb.org/curriculum/special ... 202006.pdf


It sounds as if the past experiences of with the school have created division at a time when you need to maintain a good working relationship with the school administration, to ensure your youngest student’s safety.

You point out several real concerns from this meeting are regarding the individual plan, the school training, the Principal's understanding of anaphylaxis, supervision during teacher’s breaks and the training of supply teachers.

First of all, the principal must meet with you to develop the individual plan but this won't happen until your child has been registered. So, make another appointment to do this. Individual means not cookie cutter, you have the right to be heard in creating this.

In terms of the training, find out who does the training and what resources are used. If you have concerns about the Principals understanding of this issue, I would be very concerned as I believe that in most schools, it is the principal who does the training. You might ask specifically who does the training and what training manual is used.

According to the Toronto Catholic District School Board policies, the Principal must submit forms to the Superintendent confirming that training has happened in September or October. You should be able to request confirmation that this has been carried out either by the Principal or by the Superintendent.

Your comment, “TCDSB's Anaphylaxis Policy it states that when a supply teacher comes in the principal must personally have a conversation with the supply teacher about any students at risk for anaphylaxis. I pointed this out to the principal (she had no idea) and she said, “Oh…well, that just won't happen.”” is very disturbing.

So, you have a couple of options. You can accept what the school has very clearly stated as the level of care you can expect for your 3 year old child; you can change schools; you can try to work with the Principal to create a dialogue of mutual respect that allows for open minded review of the policies at that school or you can go over the Principal’s head and work with the Superintendent, conflict resolution board, Ministry of Education’s Liaison Officer and possibly legal action in enforce legislation.

I think that later will cause more trouble than it will resolve.

What ever you decide, be sure to take notes and follow up with an e-mail thanking the principal for meeting with you and reviewing all that was discussed. You will need written documentation of the processes taken and of the comments made by the Principal if you want to hold them accountable.

I understand why your husband wishes to avoid these meeting but, it is important to present a united front. Otherwise, it can be seen that you do not have his support and you can be made out to be over-reacting in the minds of those who wish to believe this.

_________________
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 horrified! Here's a little story a neighbor told me. Their kids old school (moved from out of province 2 years ago) had a principal who had very much the same sentiment towards allergies as this principal you are describing above. One day she (the principal) borrowed a friends car seat and put her small child into the borrowed seat. The child who owned the car seat commonly ate peanut butter while in the seat. On this day the principal discovered that HER child had a peanut allergy as her child had a severe reaction from the trace on the seat.
After this discovery my friends said the principal had an entirely new outlook towards children with life threatening allergies. I would never wish a child to have an allergy to teach a parent a lesson, but I do think that unless the subject hits close to home people just really don't get it.

_________________
DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish

At the school where I work it is a nurse from our regional health authority that does the refresher first aid training. Is that an option at your school? How can a Principal possibly answer medical related questions? They showed a video from the epi-pen website which shows an epi being administered to a child and made me almost pass out as it was just after I administered my daughter's epi.

I completely agree with Susan's point to document the disucssions. That will also help if you one day need to go to the school board.

What are the ages of the students that supervise the JK? I know of many grade 7s and 8s that I would trust to watch a young child BUT none that could handle an entire class. At our schools it is not until grade 1 that they get any student supervisors.

This may sound odd but I wish that I had videotaped my daughter's reaction as well as the paramedics and firefighters in our house and the ambulance trip to get people to partially understand what we are dealing with!

_________________
me: allergic to crustaceans plus environmental
teenager: allergic to hazelnuts, some other foods and environmental

Walooet you are so right. A friend who is a trauma nurse told me that exact thing. She said that people who think a reaction is a bit of swelling and discomfort are so off base. She said that if anyone saw a full anaphylactic reaction and how truly awful it is and how it effects the entire body would never question the seriousness of allergic reactions again.

Our school board is having a complete review right now of anaphylaxis policy. I had mentioned a few things which concerned me- one being how the children with allergies are supervised by children when they eat. They really didn't see what I was concerned about. Especially when children are very young (Jr. K, Sr. K and grade 1) I said I would be very concerned not to have adult supervision. My point was lost. As was when I mentioned that basic hand washing would not only be free but contain all the peanut/nut/milk/sesame......trace to the classrooms which are free to eat such foods (as my daughter's is this year). The response was 'do you know how much time would be wasted if everyone washed their hands before and after eating!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!. I responded by kindly mentioning that general health for all students as well as teaching basic hygeine to our kids could never hurt or be a waste of time.
Because of the review I've been in contact with the school already over many allergy issues even though our son is son young. Seems like many points still hit a brick wall.

_________________
DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish

It seems logical to me that if a 11 or 12 year old student is required to supervise 3-5 year old JK/SK students at possibly the riskiest time of the school day, then it would make sense that the principal be required to ensure that these 11 and 12 year olds receive proper anaphylaxis training.

I also think that the parents of the older students need to be aware of the responsibility placed on their children.

11 years old is too young to babysit let alone supervise and be prepared to react to a life threatening medical condition.

_________________
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 a great point Susan! It is a big onus to put on the student as well and that is why I thought it could be much easier if there were actually older students with FAs who would understand.

At my kids' school, lunch is eaten in the classrooms and students in gr 1-4 are supervised by students in grades 7 and 8. Usually 2 older students per class. There are also adult monitors - about 1 for every 3 classes. I always told the kids that if there was a problem you could go in the hall and scream and guaranteed there would be an adult there quickly!

_________________
me: allergic to crustaceans plus environmental
teenager: allergic to hazelnuts, some other foods and environmental

Thank you everyone for responding. Here are some answers to some questions asked above:

My son does not currently wear an e-belt. He is only three years old (will be 4 in December). The principal told me that it “was up to me” to decide if I wanted Shannon to carry his own epi. But, (a) the school board’s policy requires each anaphylactic student to carry an epipen and (b) if he didn’t carry it, I’m not convinced someone would remember to take it to the library, the gym, etc. So, while neither option seems ideal, I think that it would probably be best if he carried it. Still, the thought of this makes me very uncomfortable.

I have thought very long and hard about whether or not to even register Shannon for school at all. I want him to have as normal a life as any other kid. He knows his older brothers go to school. He knows that he’s scheduled to start in September. I really want him to be able to go. I also think that it is his right to be able to attend school like every other kid!! And it should be safe for him...or at least, as safe as possible. I have also thought about other schools but the truth is, I think I’d have the same, or similar, battle anywhere else.

It’s actually not my husband who doesn’t want to go to meetings; it was my idea for him not to come. He is willing to come. If he came we’d have to bring the baby too, which might be a bit distracting, but I think would be okay. Thank you for this point Susan, I will give this some more thought.

Walooet, very good question: “How can a Principal possibly answer medical related questions?” I think I’ll bring this up.

The students that supervise the JKs can be as young as grade 5. But even if it were a grade 8 I still would not be comfortable with it. Supervising someone with MFA is a huge responsibility – not one that I think should be placed on a child. Ever. Period.

Videotaping reactions – on this topic, we once videotaped my second son having a life threatening croup attack (do you call it an attack? I don’t know). We did it because nobody believed that my son had repeated severe croup (which we think was related to allergies...not sure now since he has mostly grown out of it). Anyway, it ended up being the most severe croup he’d ever had. Long story short, we called 911, he was blue by the time paramedics arrived (which was 3 minutes after we made the call), had police escorted ambulance ride to the hospital and we had a team of doctors and nurses waiting for us at the hospital on arrival. He ended up being okay but it was the scariest thing that has ever happened to us. While the cause was croup, I imagine this is also what an anaphylactic reaction might look like – not something I ever want to see again. In the end, the video came in very useful as we showed it to all the specialists we ended up seeing as a result of this emergency. No words could have described the situation as well as the video did. One doctor sat speechless for a moment after watching it and finally just said, “Wow...that was horrific.” Indeed it was.

Ah, sorry my responses are always very long...it’s not always easy to find the time to respond right away, lol!

I am so grateful to have found this group. I suddenly feel like I have a tonne of allies!

Amanda

_________________
DS 1: environmental allergies. DS 2: penicillin allergy, outgrew peanut allergy. DS 3: allergic to dairy, eggs, banana & tree nuts. DD: no allergies. DH: bee sting allergy, lactose intolerant. All have asthma. http://www.familynature.ca

Regarding your son carrying his own epipen, I've heard varying responses to 'what is the right age to start carrying it', and those have ranged from about 3 to about 8yrs old.

In our situation, my daughter didn't need to carry it in preschool because she was always either in the classroom with at least one teacher, or whenever they went outside or to the gym, they brought her epipens in the first aid kit. However, since she will be in K in Sept and will sometimes be outside for recess with just 4 teachers supervising almost 200 children, I wanted her to start wearing it in preschool to get used to it. Also, any other kid who has a question about it will ask now when there are 3 teachers to field the questions instead of next year when there will be only one, and she could possibly get teased about it without the teacher noticing.

For my son who is 2 1/2, I got him his own kozy epi this month with the intention of him wearing it when he starts preschool in Sept even though he doesn't really need to. Part of the reason is the be able to buy fewer epipens. (If I were to leave 2 at the preschool, I would then have to buy 2 more to bring with me every time I go out with him). So I will have 2 on DD's epibelt, plus an extra at the school office, 2 on DS's epibelt plus one extra with the preschool first aid kit, plus 2 at home, and 2 in the diaper bag. Sorry, long winded answer!

_________________
DD 2004 Allergy to peanuts, egg, sesame, and new: lentils and chick peas
DS 2006 Allergy to peanuts, tree nuts, milk, egg, kiwi fruit, eczema

Our daughter stared wearing an E-belt the sumer before JK and she was 3.

You need to judge your child, she is very cautious and would not mess with rules around safety.

Know that there is no rule that says your son has to go to JK. If you are having huge doubts about his safety, you can always cancel his registration at the 11th hour.

If you have a baby, you will still be home?

_________________
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