Talking Allergies

When I wrote my previous post I didn't know what tiddly winks were. My husband informed me. That would have been perfect!!! I remember using these in school and they worked great. If the kids really aren't paying attention with them, could they decorate them with cool stickers? Surely there is a way to get their attention without food.

Please keep in mind that I live in a different time zone, and therefore it is not after 11:00 to me. Some of my posts might imply that I'm up really late...but I'm really not.

When my son was in grade one, he got quite defiant about being allergic to peanuts. The last time he had had a reaction he was three and he didn't remember what it felt like. I knew he was sharing snacks with kids at school and I told the teacher of my concerns. The snack sharing goes on at recess and 3 staff (not the teacher) supervise 500 kids, so it wasn't something that she could really control. I have been teaching my son about his allergy since he was one year old, but I knew that nothing I was saying was really making a difference.

As you might guess, sure enough, one day he took a bite out of a peanut butter granola bar. Then, he didn't tell anyone as he was scared of getting into trouble and scared of getting the Epipen. Anyway, it all ended okay - we all lived to fight the fight another day.

I am sharing this horror story so that parents never assume that just because youv'e taught them doesn't mean they've learned. That goes for the kids and the adults.

Now he is very conscientious, in fact he is now so anxious that it has created other problems. The school is also much more concerned.

In my 7 years of dealing with anaphylaxis I have figured out a few things that keep me sane. I no longer expect that I will get this kid through life without any accidents. Our family does as much as we can to keep him from contacting peanut, but if he does he is wearing the epipen, which will save his life. I do what I can, some things I won't be able to control, I have to accept that and leave it in God's hands.

I have learned to never lose my temper with people's lack of understanding about anaphylaxis. It never gets me anywhere. I know of some parents who were very forceful about getting their schools completely nut-free (eg - freaking out on principals if there was a nut chocolate wrapper on the ground), and they ended up alienating themselves and their children from the rest of the school and the next year the school dug in their heels and would only do as little as they had to - nuts could come into the school and the child could eat at a special desk of their own outside the class.

Teaching the staff about anaphylaxis is a process, and it is unfortunate we parents have had to take on the responsibility of doing the educating cos it just isn't fair. Health care professionals do the training with every other health issue. Why do we have to do it for our kids? Anyway, the one way to deal with this is to start pushing for legislation across the country.

Pam

I've never actually lost my temper with my daughters school. I understand that they are really trying, and they are learning.

I have refered to myself as a raging lunatic at times, but I'm usually just raging on the inside. On the outside I probably come across as a very loving mother who has justified fears ( or so I think ). I've found that being really upset works well, and throw in a few tears here and there, that works great!!

I do agree that you need to have a good relationship with the school, but when they have screwed up, they need to know.

5 days ago, our 4 yr old son came home from school complaining of a tummyache, shortly followed by a headache and almost uncontrollabel coughing. My wife administered his epi-pen, which seemed to have little effect as his little face was swelling, and his eyes looked like two, bloodshot golf balls. The ambulance arrived and he was given another dose of epi, and ventalin as he was now starting to struggle for breath. Had the the paramedics been a few minutes later arriving, this would have had a tragic ending. He was taken to hospital where he spent the next few hours in emerg and spent the night recuperating. He is back home now, fully recovered physically. But he is still not back to his old self emotionally, and will probably take some time to be.

We racked our brains trying to figure out how this could have happened. We have known he was allergic to peanuts since he was a year old, and have been very active within the community and his school trying to educate the teachers, parents and community about the potentially severe consequences that may arise for our little boy if he comes into contact with even a minute quantity of a peanut product. His school was declared officially nut free this year, and we believed we were on the right track.

It now appears that there is still a lack of awareness and ignorance in our community when it comes to anapylaxis and food allegies in general. People still don't get it.
They do not understand that our little boy could die due to their ignorance, or worse, their lack of concern.

We have since found out, from our son and then the school, that he was given a special treat at school that day. He also said that he asked his teacher if it was safe to eat, and he was told yes, it was. A parent had baked some marsmallow squares as a special reward for the class, and told the teacher that it was nut free. However, it was baked with butterscotch chippits. When we heard this, we knew that this was the trigger, as we have never found a product like this that is not "may contain". I love butterscotch and have been looking for 3 years.

This is also the second time in 2 weeks that he has been given food in the school that did not come from home, and without our knowledge. Both violations of the schools policy.

I have never in my life been so scared and angry. It took a few days to calm down enough to actually meet with the principal to discuss what happened. Together we realized that getting angry was a normal reaction to this, but it would not help to correct the problems that caused it. Education and awareness will. For ourselves, and the community.

We have since met with the principal, and are planning further meetings with the staff, and hopefully with the board. The silver lining that we are clinging to, is that he asked about the food, which tells us that he understands his allergy enough to ask an adult before eating something. We are also getting an outpouring of support from those in the community that do understand. But we still have a long way to go to educate the others.

The school is now being VERY supportive and is agreeing with everything that we want addressed, and is also implenting some innovative ideas to help protect all of the students at risk. The principal and staff now understand how severe and fast his reactions can be. It was about 1 hour from the time he got home until he was in the ambulance. They also understand that we will do everything in our power to reduce the risk of this happening to any child in that school again. We will not go away.

This has turned into a lengthy post, but I needed some therapy, thanks for reading.

The hick mom's hubby
beckers@bmts.com

How awful for your family to have had to go through this!
I am glad that your son is physically ok. After our 'treat' situation, I have sent approved treats and told the teacher in writing that our daughter is only to be given parent approved treats.
I am glad that you were able to turn this near tragedy into a positive learning experience.
Your son will see how the schol has improved and this will probably help instill the trust that must have been lost when his teacher told him the treat was ok.

I am so sorry to hear your story. I am so glad that your son is okay, aside from being traumatized. We told my peanut/nut allergic daughters school "NO FOOD THAT DOES NOT COME FROM HOME!" they have never fed her anything not from home, but have attatched "treats" like candies to crafts that she has made, and said that it was part of the craft. She did not eat it, but I had to break her heart when I took it away from her. I'm glad she did not eat it while making the craft. I have since given them a bag of candies from home (snack size swedish berries and fuzzy peaches) that she can have instead, but it does not sit right with me.

I don't think that schools should be giving kids "treats" anyways, regardless of allergy concerns. I try really hard to make sure that my kids eat healthy. The schools need to be promoting good eating habits, and rewarding with "treats" is just setting a bad example.

I don't want her coming home from school having eaten candy, and now does not want her lunch. She does not eat a morning snack at home, but has one at school that I have sent. I usually send fruit, but it is a struggle to get her to eat breakfast on school days because she likes to wait for her fruit at school. She then does not eat a full lunch when she comes home. I wish that they did not have snack time at all because it interferes with meal times.

How awful that your school had to wait until someone had a severe reaction before they started to do anything. I agree with the comments that this really shouldn't be parents responsibility to have to educate others. First of all because as parents it is so terrifying to have to contstantly explain and go over the facts again and again and again, and experience all of your fears and anxiety every time you talk to someone about it. I know with trying to convince my school in the last 2 months to take my daughter's allergy more seriously it is taking a huge toll on my emotional health - difficulty sleeping and eating, crying, feeling trembly and flushed all day, etc. And we have not experienced a horrible situation like this.

At this point I know for myself I feel more like just switching schools to one where they already have a safer environment than having to constantly go through all this fear and anxiety. I may eventually be able to create a better environment at the school, but is it worth the emotional trauma on my part to have to do so?

Are you in a situation where you can change schools, or would you consider doing it? It may be worth the reduction in stress levels! Then again, how can you possibly guarantee that the next school will be any better, even if they do seem on the surface to be addressing all of your concerns?

How would it be possible to come up with some sort of federal legislation, so it can all be looked after in one fell swoop? Or are there people looking into this already?

Hope you are all doing ok and coping with this horrible trauma.

I'm so sorry to hear about your son's reaction! It sounds like you are very fortunate to have him still with you.

It could have been the butterscotch chips--or it could have been from cross-contamination in the kitchen. Someone who wouldn't worry about the "may contain nuts" label might not worry about nut-free storage and preparation. I would guess that your school now would be as safe as any--it sounds like they had quite the shock. I don't think your son's teacher will be feeding him any more snacks! I suppose that you could sue over this since it *was* the school's policy not to give your son any snacks not prepared at home. Since this was not the first time it happened, it is a clear case of negligence.

I hope that your son is coping well and will be back to school soon.

Best wishes to you all.
Lisa

Thank you Hickmom for sharing your story. Your story reminds us that we have to be constantly on top of the school to follow policies and to keep our children safe. Right now in Ontario school boards are revising policies prior to the mandatory implementation of Bill 3 in January. I contacted my board in June to sit on the committee overseeing the revision of the anaphylaxis policy. I have a meeting next week. I plan to ask the board to add to their policy that children at risk of anaphylaxis should never be fed any food unless it has been provided by or approved by the parents. Boards hear the stories that end in a fatality like Sabrina's but what about the stories like Hickmom's. How many close calls are there each year? I would guess there are many. I hope that you are all doing well.

Schools have "student accident insurance". I'm sure that feeding a child without consent, and causing a major reaction, is reason enough for a claim. My brother contracted scarlet fever in high school ( he is okay). My family could have made a claim and been awarded money ( about $500), but we did not.

If you made a claim, (I'm suggesting it out of principal, not just to try to get money) the school might have to pay you for damages (mostly emotional) that you suffered due to their neglegence. If parents are claiming "allergic accidents" due to the schools neglegence, and the school board is held financially liable, maybe the school boards would be more involved in ensuring the safety of allergic children at schools in their districts.

So here's an update on our situation.

Zach is doing well, and has for the most part recovered physically & mentally now. He still is clingy sometimes and has to take "beary" all over the house now. He used to stay & keep his room company.

We have tried to find the silver lining in all of this & have taken our anger & frustration out this way....

We met with the principal & teacher & has worked out an action plan. We have instructed them that Zach is not to get anything unless I send it or bring it in. Parents who want to bring treats, for any class need to contact me. I will advise to what they can bring. Which brings me to the staff. We attended the last staff mtg with another parent, the local pharmasist, and all the bus drivers. The pharm. taught & reiterated how to use the epi pen. She explained the symptomology. & she answered questions. We all answered all the awsome questions they still had. Our school has decided that there will be no bake sales now, we are still working on what to do.
We will suggest that if people have to bring in a snack they order a cake from a local cake maker that I know very well, and use her products myself. If that's not an option due to cost, then we will reccommend, nut free products such as Dare & Holanndia products, reminding them to check labels.

Then we baked 14 cakes on Thurs evening for a celebration the school was having after finding out the group organizing this tried to order the cakes thru the local grocery store, which we all know is a big NO-NO! At the celebration the principal awarded our eldest a bravery cert. for helping me during Zach's reaction. We all thought it was a great idea!

Next we had a tv interview with our local station. They interviewed me, the principal, and the pharmacy. They had some shots of the class too. All with permission from the school & parents! The camera man just found out that his 5 mos old is allergic to peanuts! The focus was on Zach's near death reaction & how serious this allergy is.
I have copies if anyone woud like to see it, not sure i I can post it.

Then I did a live radio show with another station. I was suppossed to go into the station but we were on day 1 of a 2 day snowstorm so I wasn't going anywhere! The show was on public awareness & was suppossed to be for only 20 min. We were on for 50 min. Had a lot of call ins with good questions and stories of their own. The radio interview had me with butterflies in my stomach for the day but if it gets the message home to a few more folks I think it's worth it.

We have also ordered "safe" bracelets for our close family & friends.

The local paper is doing a story on what happened next week. as it the next community over.

I think that's pretty much what's been going on for the past 2 weeks!

Some may think this is overkill but in this community it is not as well understood as some of the ciity communities we have lived in or know of. I want to use all the tools available to us to educate our community. We are fortunate to have some friends in the media who made this possible.

If anyone has any other suggestions on what we can do I would appreciate it.
I just feel fortunate that I can be doing this for my son and our community instead of what I would be doing otherwise if we had not responded soon enough!
hickmom

Wow!

I think you did a great job in reaching a lot of people and increasing the awareness of this issue. You really used your energy wisely.

That's great to hear. It sounds like everyone is now being supportive. You must have had a very very busy and draining couple of weeks! I hope "beary" is also helping your son to feel comforted during this difficult time.

When my 1st DS was in JK (2 yrs ago) I went on a field trip with his class. After a tour of the farm the classes sat down and a teacher proceeded to dole out cookies and juice. I took the cookie before my DS grabbed it and asked to see the package. The package said "may contain nuts". I was so livid I was shaking!!! Then to top it off my poor DS (at the age of 4) had to sit there sipping his juice while watching his classmates gobble down 2 cookies each!

The teacher giving the cookies was another JK teacher so I spoke to my DS's teacher and voiced my concern. She talked to the other teacher and then I proceeded to talk to the principal. It's situations like that that make me so scared for my little boy!!

Education and persistence is the key. The teachers, principal etc MUST realize how important it is to be vigilent when it comes to what our kids eat and come into contact. I'd definitely talk to your principal and get some idea of how this will be avoided in the future.

_________________
SAHM of 3 children. Oldest DS (1999) is anaphylactic to peanuts.

She did it again! Our daughter came home with a sore tummy which started in class. On the answering machinme was a message from the school teacher. Another parent of an allergic child was at school and she had a gingerbread cookie. The teacher saw the recipe and felt that the cookie was safe so she told our daughter it was safe and offered her a piece. She felt it was important to leave a message on our machine to this effect and hoped that I would call her this evening if I had any issues with it.
I have met this particular parent and the parent has e-mailed me a gingerbread recipe which I am sure is the same one. We have discussed the decorating of gingerbread men in this class and I have been purchasing safe candies. I have spoken to this parent about concerns regarding cross contamination and she is very aware of this and has assured me that any cookies which she sends would be safe.
The concern is not whether the cookies are safe. It is the teacher making the decision that they are safe and offering our daughter some. I have written to her in the past to say that we do not want our daughter eating anything unless her Mommy or Daddy have approved it.
I really feel that the teacher is meaning well but just not grasping the concept here of undermining the parents who are trying to teach their child an important family rule that applies not only to the school but in every facet of life.
I am sure that the tummy ache our daughter suffered was due to anxiety over pleasing her teacher by going against what she has been taught at home.
I will drop my daughjter off at the daycare tomorrow and march over to the school to dicuss this with the principal.