Talking Allergies

Hi Everyone,

How does one prepare for highschool. My son will start grade 9 next year, and I am very nervous as the schools around us really don't see to care.

Thanks

Hi Julie Ann,

I am so sorry the original thread of this discussion was lost. We had quite a lengthy look at high school. From my own experience, when my peanut-allergic son started grade nine, I was told that now that he was in high school he would be "on his own" as far as his allergy went. Every year we have had a new principal and I send in my allergy binder (a jam-packed photo album of news and on-line articles) and I get a polite phone call and a meeting. I never felt totally comfortable with the assurances I was getting that everyone understood what to do. The latest principal even admitted he had never seen an Epipen. But with Sabrina's law, I feel I have more power. I alerted the school about the law coming into effect last Spring. There is now a formal written action plan in case of emergency. All staff have received Epipen training. My son is still responsible for being alert, asking questions and staying as safe as he can, but at least he is no longer "on his own".

This is exactly why it is so important to legislate responsibiity! Some school boards are already on the ball, but not all.

Hello Julie Ann,

In September my peanut anaphylactic son started high school. The nervousness I felt last year while he was in grade 8 were those same feelings I had when he started school. I had forgotten the intensity of those feelings but felt they were good nonetheless. They would help me to prepare and make sure the school and my son were prepared too!

I would start by contacting them early. I made my initial call in January. If Sabrina's Law will apply to you(you are an Ontario resident) I might even do so now to be part of the decision process. It may be easier to affect changes now rather than later. I met with the VP in early June after a few phone calls and emails to discuss this situation. Nothing was determined at that time. He travelled to my son's school to introduce himself and help put my son at ease. I received a phone call in about a week with some of their decisions a few of which I was not pleased. They suggested a meeting of all parties(my family, VP and principal) and this could not be arranged until two weeks prior to school returning). At this meeting a satisfactory approach was achieved.

Issues that were brought up were:

1)Will the school be designated-"peanut/nut free"?
Will it be noted in the student handbook? Mentioned in newsletters?

2) Cafeteria-Will food be restricted to the cafeteria? Will the food service provider knowingly be serving foods that contain peanuts/nuts? Vending machines-will they have peanut/nut products? What about cleaning of cafeteria?

3) Hospitality Services-if your school has a program will it be peanut/nut free? Can your child take those courses safely?

4)Staff-when and how will they be notified of your child's allergy and emergency plan? (I recommend having your child introduce himself to each teacher on the first day of class) Will there be a section in their handbook regarding dealing with anaphylactic students? When will they have training on recognizing the signs and symptoms of a reaction and on how to use an epipen? Where are emergency plans kept and how are substitute teachers notified?

5)Facility Rentals-if the school is designated peanut/nut free then contracts for rentals need to stipulate the same condition.

6)Bullying-how does the school plan to react to this in the event it should occur(which I hope never does!)

7)Establish an emergency plan

Include your son in as many meetings as possible. It helps to make that transition to independence and it puts a real live human face to the situation.

9)Get a copy of the last issue of Allergic Living where they did a feature on high schools. It was excellent.

I am sure there are other points which I have missed but am trying to keep this post to a short novel .

My only other point is this- I was told by the administration at my son's school(a brand new facility which opened in September so the majority of the student body was new to this administration) that there were about 7 students in a similar situation as my son. At that meeting two weeks prior to school starting, I was the ONLY parent who had contacted them regarding peanut/nut allergies I was stunned! I still am! You are your child's advocate-it doesn't seem likely that anyone else will stick up for him. You know him best and what he needs to make school a safe place-don't let anyone tell you otherwise! If administration isn't helping making safe decisions then try your trustee, your superintendent your MPP(especially if you are in Ontario as the bill received unanimous support). Don't give up and keep us posted!

Andrea, thanks for the very useful information in your post.

I am glad to share some of our experiences and hopefully iit will help others with their own challenges. This thread helped me immensly when going through the high school process with my son. I only wish we could generate a little more discussion on this topic.

In the last issue of AL magazine, an article pointed out that one high school does spot checks on anapylactic students to ensure they are carrying their epipens. Any thoughts?

Thank you very much for your suggestions, I found them very helpful. We are in Ontario, in York Region. Our local high school suggested kids with food allergies could eat on their own in a classroom.

How cool is that in high school, talk about setting yourself up to not fitting in.

We are continuing to look around at other schools in the area, and hopefully soon we will find one that is a little more open than our local school.

Julie Ann

I have had similar experiences, Re: other parents not letting the school know how serious the allergy is. In my son's school, there are 6 kids with ana., I am the only one who has asked for a policy/emergency plan/limits on allergen etc. Some of the other parents haven't even given the school an epipen. Is this normal? Does anyone have any idea why some people/parents do not treat anaphylaxis seriously? Do you think it is denial or is it lack of education or something else? I run into this all the time, where people who have anaphylaxis tell me they don't have an epipen,

I know for myself, I feel really intimidated approaching the school, but I force myself, do you think that's what it is?

If you have any idea, please respond, as I have wondered about this for years, and I have no clue. The minute my kid was diagnosed, I immediately became extremely anxious, and I can honestly say that since that time there has not been a time when I wasn't preoccupied with it, whether it's remembering the epipen, checking the food, thinking about what to avoid, etc. etc. etc.

Pam

I have definitely ran into this. I was not the first parent of a child with allergies in my daughters school...but I was the first to thoroughly explain how the epi pen works, explain cross contamination, the dangers of the water fountain and insist on my child only eating food from home etc. etc..

I think that with parents ( all parents ), there is a wide range of how they choose to follow even obvious parental guidelines. I have seen 4 year old children at my daughters school leave in the front seat ( no booster either ) of a vehicle with airbags. I see many kids riding bikes without helmets, I have seen many young kids runnung in parking lots because their parents aren't holding their hands. I think that it is the same for some anaphylactic kids too. If their parents are too slack in their safety in other areas...they will be slack when it comes to their kids allergies too.

With all these examples...the air bag, the bike helmet, the food, they usually do not get hurt, but when they do...they get really hurt, and it was so preventable. I'm pretty sure that the rest of you parents who post here too are also the type to make sure that your kids wear their helmets, and are properly secured in a vehicle. Unfortunately lots of parents are niave.

I agree with saskmommyof2. I also believe that many parents mistakenly believe that the school system is somehow connected to the healthcare system (both pubicly funded?) and that there is a policy in place or a flow of communication.
I also believe that some people choose to avoid unpleasantness be it in the form of talking to those in positions of authority or the thought of an anaphylaxic reaction.

I am also shocked at how some parents choose to manage anaphylaxis. At the school where I teach, there are several children who do not have epipens. I have talked to my prinical about this matter and she said that we cannot force parents to provide one or force children to carry it with them. There are several parents who don't want the epipen carried on the child. These situations send mixed messages to schools and teachers. They start to think that maybe there are different levels of severity with peanut or other food allergies and that some parents are too overprotective (remember teachers and principals are not health experts) There needs to be consistent information given to schools. I explained to my staff when I trained them that these parents are ignoring medical advice when they choose not to provide an epipen or insist on their child carrying it always. It helped to clarify for them why there are variety of emergency plans in place for anaphylactic students in the school.

I told my daughters school that I know that there is a wide range of the way parents of allergic kids deal with their kids allergies. Some parents like me choose to follow the doctors advise...and be proactive in preventing reacions, and proactive in teaching others how to help in the case of a reaction. There are also parents who do not follow their allergiest advise, and put their kids in harms way on a regular basis.

I lent the school some alexander the elephant books to read to the class, and have given them some published info. on allergies...to show that it is not me that is overreacting. The published material from other infomed people, such as allergists, proves that it is in fact I who is following guidelines and not the slack parents. Some of the info. included was about how future reactions can not be determined by past reactions, and unfortunately we do not have a "crystal ball" to know which child will react severly, and how much exposure it will take. I'm not sure if all schools realize this.

It is unfortunate that parents are primarily responsible for the safety of their allergic child, because if the parent is being neglectful...the school will then provide neglectful care to the child.

I also think that a lot of parents who have not had anaphylactic experience ( I have not either ) assume that their child must have a "mild" allergy. Other parents have said to me that their childs allergy is not as severe as my childs...even in cases where their child has asthma and mine does not. I would really like to know where they purchsed their "crystal ball" because I would like to have one. It unfortunately takes repeted anaphylaxis for some parents to realize the severlty, and sometimes even that is not enough (speaking of my MIL when my husband was a child ).

But do you think that there are some parents of allergic kids who aren't given any advice on how to deal with allergies and who simply don't know? That was the case with my parents. I would *think* that most doctors would be more proactive today and at the minimum: prescribe an epipen if there is evidence of a severe allergy, make sure that the parents of the allergic child know what to do in case of an allergic reaction, explain that you can't predict the severity of a reaction based on a previous one. Also, I would hope that they would broach the topics of: the risks of cross-contamination, the need to find out about food labelling issues, the possibility of reacting through skin contact.) I wonder, though whether this is the case. It's just hard for me to believe that there are so many parents out there who don't take basic precautions.

It was stunning for me to realize that too Lisa. Twenty years ago, maybe it was a lack of information...but today the information is out their if you look for it. The allergist explained a lot (overwhelming somewhat ), but did direct me to anaphylaxis canada, and other resources, and it was my choice to educate myself.

I wrote elsewhere how an ER doctor that I met twice while at the hospital with reactions to playdoh and chicken, told me of other parents with allergic kids that he sees REPETEDLY for careless reactions and home "food challenges" to the point that he has contacted social services.

In any health condition, their are always those who do not follow doctors advise.

I truly believe that it is the role of the allergist to educate the parents. It is overwhelming to hear that on top of the usual responsibiities of raising healthy children, now a seemingly harmless wholesome food can kill your child and oh yeah, it's in just about everything.
Yearly allergist visits do more than just test that the person is still allergic, they are also an opprtunity to see how the patient is managing their allergy.
It is a huge learning curve and there is a lot of information to absorb. Some people rise to the challenge and some unfortunately can, don't, won't ...?
If schools had a legislated policy, it would go a long way in protecting those children whose parents don't seem to be able. Maybe you eat may contains at home and don't always carry an EpiPen, but at school that is not acceptable. Perhaps it would serve to reinforce to those parents that they need to be a bit more proactive and not just leave everything to fate.