Talking Allergies

Wow! A note from the doctor should halp alot. Pretty hard for the administration to argue with that. And as a bonus...looks like your not crazy after all...ha ha... I think we here new that all along!

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DD age 9 1/2 -peanuts, nuts,
DD age 7 1/2 - milk, eggs, chicken, peanuts, treenuts, cats, dogs,
DS age 2 1/2
Husband- asthma, eggs, treenuts, fish, shellfish environmental
Self - penicillan, eurithromiacin, mild laytex allergy.

But now I have gone from being told I am an OVER worried, picky mom to feeling like a parent that is ok letting her child go to school in an unsafe enviroment and should be doing more in a more proactive way than working with the system. I am so muddled up! Honestly, I am not usually this unsure of myself. . . I hate it. . . but I just don't know how to handle these dicotomies some days. I need to find the discussion forum on dealing with stress related to living with allergies. Karen, any suggestions on the right topic for that discussion? Feel free to PM me. . .

Caroline

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son anaphylactic to peanuts

Caroline,

I had A LOT of stress last year and up until last february. My daughters preschool experience was not a positive one. She was continually left out and was even being bullied by a classmate who kept telling her he "had peanuts in his pockets". Dealing with the school was really tough, and yes, we too had issues with "does the school think I am over reacting" and other delemas. I don't like living unsure of whether I am coming or going. We debated the homeschooling issue in our house for a while...but being unsure of myself and future school situation was really tough. I'm sure once your sons school gets the school environment up to a safe level, and things are a little more consistent things will get better.

I did start this thread a while ago

http://www.allergicliving.com/forum/viewtopic.php?t=490

Funny that we started playing poker Saturday nights with other allergic kid parents and other friends and it was nice to have that break from my real world. We played almost every Saturday until summer...and we've started up a bit again ...I don't think we will do it EVERY Saturday like we had been but once or twice a month is just right for us.

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DD age 9 1/2 -peanuts, nuts,
DD age 7 1/2 - milk, eggs, chicken, peanuts, treenuts, cats, dogs,
DS age 2 1/2
Husband- asthma, eggs, treenuts, fish, shellfish environmental
Self - penicillan, eurithromiacin, mild laytex allergy.

Caroline2-
Send a copy of the DR's note to the schoo principal; your schools superintendent and the superintendent who was sympathetic to your plight.
Request that they respond the following day.
Can you contact the Education Officer at the BC Ministry fo Education? Advise them that your medical Dr is advising that the school is placing your child in a life threatening situation and that you are not getting anywhere with them. You may have to pull your child out of school for a period of time. (what grade?)
Ask your Dr if she would be willing to speak to these people.
Contact a lawyer (most give 30 minute consultation for free)
Are there no local support groups who can band together with you?
I would seriously consider going to the media, especially with such a forceful letter.
Good luck.

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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

Caroline2: You are not crazy or overprotective ( but I know how you feel). What I find frustating is that if any of the people you are dealing with had THEIR child in your son's position, they would be doing everything possible to keep THEIR child safe as well. Keep us posted on new developments!

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daughter: 6 years tree nuts, peanuts

The following quote is taken from another thread (written by Pamela Lee) - it speaks to the stress of living with life threatening allergies. Maybe it will offer some comfort to know that you are not alone in how you're feeling with all of this:

Thanks for the replies, everyone. I appreciated the link, ethansmom, for it reaffirms the mixed up feelings I have right now.

On Monday I am dropping off the doctor's letter to the principal, who is going to fax it to the associate superintendent's office. We will review everything on Wednesday, but what I want is CHANGE in the classroom and it is now a month at school and it just has not happened. I am especially anxious with Halloween coming up and all. So...it might be ultimatum time. It's change or I am taking it to the minister, the premier, the press -- I need to work on the main person who will get that change.

I have also contacted a therapist that specializes in living with allergies and life threateing illnesses. As she herself has a boy with peanut allergies, I am hoping she can offer support and suggestions that will take the stress levels down a notch. Ultimately, though, if I felt like the administration of the school were on 'my' side, I think my stress would be lowered greatly. At this point, my husband is not in agreement about removing my son from his community school so that is not an option right now. We are detemined to work within the system... but that determination is wearing thin on me as I don't think being this worried all the time is healthy!

Thanks for listening,
Caroline

Caroline2, I think you are right to keep your son in the school as long as you are able to cope with the stress. That lunch supervision policy needs to change for the safety of all children.

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daughter: 6 years tree nuts, peanuts

That GP is a keeper!

We had our allergist (whom I love) write a very strong letter about the seriousness of my youngest's allergies and I believe it helped us a lot when dealing with the school administration. It also formed the basis for his personal anaphylaxis emergency plan because she put details in about how to deal with the variety of symptoms that might appear (he's got both asthma and allergies).

I personally feel that it's a very smart thing to have a letter from a medical specialist, in particular if you get resistance from the school. It does show that it's not just in the parent's mind - it's a serious medical condition that the school needs to be aware of and prepared 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

Having been in both situations, I can tell you that you are 100% correct.

Happy story: Our daycare "got it" from the beginning. They took our concerns seriously, listened to us with respect, made policy changes that would help keep allergic kids safer, and basically DID THEIR JOB. I loved that place and the staff, gave back to it as much as I could (volunteered, was on the board of directors, etc.), and felt that my children were in good care.

Unhappy story: When my oldest son started school we were treated like neurotic parents and made to feel that it was because our child was "our first at school" (i.e. we were inexperienced) that we were (understandably) nervous. When I asked the kindergarten teacher what the school policy was regarding allergies she told me there wasn't one... but there was a peanut-free school in another neighbourhood (with the implication that my kid could go there if we weren't happy...). We discovered that there actually WAS an allergy policy 1.5 years later. So either they were hiding it or they didin't know it existed... either of which is pathetic. We were brushed off by the administration when we asked that they carry out their responsibilities as per the newfound policy... It was horrendous. And now that I've heard a few stories I realize that it wasn't all that bad compared to what some are going through.

Things have improved - there is a new principal and the school nurses have improved (the one that was there the first year did not seem very allergy aware). And my stress level has gone down enormously.

So it's very true that if you have to struggle to get cooperation and to be taken seriously - if you struggle with the very people who should be working with you to help keep your child safe - the stress is enormous.

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

I met the principal this morning and she said,

But despite this, the meeting was civil and she genuinely acknowledged the stress of the situation.... I just feel so pulled and pushed!

I will be getting a response from the superintendent's office some time today or tomorrow on whether or not they will look at the policy. Cross your fingers for me.

Caroline

Hello...wake up. Many schools are.

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DD age 9 1/2 -peanuts, nuts,
DD age 7 1/2 - milk, eggs, chicken, peanuts, treenuts, cats, dogs,
DS age 2 1/2
Husband- asthma, eggs, treenuts, fish, shellfish environmental
Self - penicillan, eurithromiacin, mild laytex allergy.

She can start by trying.
It sounds more to me like she's worried about having to do her job. Yes, it's going to require some work to convey expectations to teachers / parents / students and to deal with the bumps in the road as you guys iron out a safer policy for anaphylactic students. It's easier for her to say "there's no way..." then to actually have to put forth a change in policy and have to deal with people's reactions to change. LAZY!

This what I received.



I am not relieved yet, but reviewing the policy is what I want, so there's a small victory. The only thing is the doctor who wrote the note was 'subbiing' for our regular doctor and won't be the one they are able to contact. I hope my son's regular dr will be as concerned...

Caroline

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son anaphylactic to peanuts

I think this is great progress! They have responded to you, and they are taking steps to better understand the whole situation.
I wonder if they are able to provide you with an estimate of the time they are asking for. A week, a month, 6 months?

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