Need help wording an email please

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Hi- I'm pretty new here. In my introduction I mentioned I was having problems with our church changing their policy on administering epi pens etc.

I spoke to the head of the nursery about the situation and she said she was unaware that Miles had a 'life and death' allergy and that 'changes things'. I will giver her a copy of his emergency plan and a consent to administer the pen, and they will 'review' it. grrrr. The difficulty I am facing is I feel this is an opportunity to educate the people in charge of the children's programs on how all food allergies are potentially life threatening, as they are incredibly ignorant.

I thanked her for making the nursery peanut free but since they give the older kids candy for prizes including snickers and peanut M & M's as well as banana nut muffins etc in the cafe he isn't truly safe, as residue etc can cause a reaction. She said "Well we allow the nuts with the older kids because we figure they should know that they can't have those products" I wanted to scream, but that wasn't the time or place to launch into a tutorial. If anyone can direct me to good examples of letters written in situations like this or have any advice on wording for me I would greatly appreciate it. I need simple yet effective. I would like to see them stop offering candy as a prize but I know the head of the children's program is super difficult and I can almost guarantee she'd balk at that.

Thank you!!

On Jun 5, 2006

First go to [url="http://www.foodallergy.org"]www.foodallergy.org[/url] that is FAAN and they might have an example of a letter you need in their pages.

I am sure a bunch of people here have written similar letters and you might need to search here too but you'll get responses here too.

Try FAAN, they are here to help us with that kind of difficulty.

peg

On Jun 5, 2006

Maybe I'm just not looking in the right spot but I did a search here and there is a lot of information regarding schools but as this is a volunteer nursery I don't know if the law applies, and therefore my letter would be more of an appeal for the safety of kids like my little guy.

On Jun 5, 2006

This is totally my opinion...if you are up to taking it on, go for it...but I would personally 1st focus on making it safe for your son before educating them on 'everyone's' PA. Just my experience that MANY moms do not take their own children's PA seriously nor do they consider it 'life threatening'. Defining PA as life threatening in general when facing such an uphill battle, you may find a group of moms of PA siding with the church! It's amazing how defensive they can get. Then again maybe not so amazing since we all get defensive about our comfort zones as well!

Good luck. Anything you accomplish will help to protect PA kids in the future! Luvmyboys

On Jun 5, 2006

I have to agree with lmb - educating people that ANY peanut allergy could be fatal is impossible when the parents of the PA kids themselves don't believe it.

I've had a couple of shocking conversations, including one woman who didn't bother to renew her daughter's epipen prescription because "she's old enough now to avoid peanuts."

That is one of the downsides of this message board - you get so used to talking with people who take PA very seriously that you forget that this is a minority opinion, possibly even within the PA community itself.

On Jun 5, 2006

Just to add on about people taking it seriously or not (PA people). The 3 people I know in real life are very lax about it. I mean, they avoid peanuts, but don't double check things like I do. Even my son's allergist says things like Peanut Oil and May Contains are probably all right for my son b/c of his low test score. I don't take any chance b/c I have been educated on this subject, but I'm sure a lot of people just listen to their doctors (or don't go), and are much more free about the whole thing. One of my son's doctors (not allergist) has a peanut allergy herself and does not carry an epi b/c she "knows how to avoid peanuts". She said if she takes a bite of something she can tell instantly if there is peanut in it and she spits it out and has no reaction. This is a woman who twice turned blue as a child from peanut allergy anaphalaxis. I guess I've always been a better safe than sorry person, but I seriously take no chances with my sons' health!

On Jun 5, 2006

Hello again - re-reading this thread made me realize that it might seem like we are coming down too hard on your idea of an email. I still think that it is a good idea, I would just focus on your child and explain how if he touches a table that has peanut on it (for example, from peanut M&M's) and rubs his eyes, that could be enough to send him to the hospital.

Hope this helps!

On Jun 5, 2006

My fear is if I don't mention that PA are deadly I will be written off as a 'crazy over protective mom' and the policy will not change and this will directly impact my son as he will not attend nursery. KWIM? I could care less what they think about me personally but I feel like if I can impress upon them the severity of the allergy and it's not just me be a freak that it will give them pause, and my son will be safer as a result. I have no problem wording an email from an entirely personal perspective but what I am asking for is advice in creating an effective email/letter that gets the point across as I am having a hard time being concise with it. I am not trying to be a crusader for everyone's food allergies that's too much to take on (right now anyway) I think I was misunderstood.

On Jun 5, 2006

Milosmom, I understand your point. I guess you could go along the line of PA is deadly...I just wouldn't, as you said, take on fixing the system for everyone just yet=) You could try something along the lines of what our ped wrote to the school for 504...I've excerpted relevant parts...

DS has severe, potentially life-threatening, sensitivity to peanut. Since he also has asthma, he is clinically placed at an increased risk of having a fatal anaphylactic allergic reaction. Approximately 150 people die each year due to anaphylaxis to foods. DS has a history of aaphylaxis and allergy tests are positive for peanuts. It is essential that DS have emergency medications consisting of Benadryl and Epi Pen available at all times so that they may be administered immediately in case of an allergic reaction.

Avoidance of all contact with food allergens (i.e.peanut) is the only way to avoid a potentially life-threatening allergic reaction. This includes avoidance of ingestion, contact and inhalation of peanut protein. Such avoidance is a highly complex task, impossible for a child without the ongoing assistance of an adult. It is because of the very life-threatening nature of DS

On Jun 5, 2006

FAAN - foodallergy.com does have an education packet geared toward preschool and child care which might be helpful in educating your church. Also - if they are concerned with liability issues associated with administering the epi - you might mention Good Samaritan Laws...

[b]Good Samaritan Protection

Most states have Good Samaritan laws, which generally protect individuals from liability who render emergency assistance in good faith, with no expectation of payment, and who hand the patient over to appropriate medical personnel (such as EMTs or a school nurse) as soon as possible. Some states, however, have recently enacted Good Samaritan laws that specifically refer to epinephrine.[/b]

(I took that statement from FAAN's website)

Good luck! Rebekah

On Jun 5, 2006

Of course this may scare them so much they won't want the responsibility! LOL! You'll also need to explain what you want them to do in addition to holding the epipen. Then again you could work on the epipen part first and skip the whole thing about avoidance for now. Good Luck...luvmyboys

On Jun 6, 2006

Quote:

Originally posted by milosmom: [b]I have no problem wording an email from an entirely personal perspective but what I am asking for is advice in creating an effective email/letter that gets the point across as I am having a hard time being concise with it. [/b]

Would it be helpful to post your first draft here, and posters can offer editing feedback? (Just trying to suggest something to help you move this project forward. I think members would probably find it easier to respond to something you've written rather than try to write something for you.)

On Jun 6, 2006

Good idea Gail- thank you. Also luvmyboys I hope you don't mind but I reworded the information your doctor wrote for my letter- it is great! Thanks everyone.

Dear *******,

I appreciate this opportunity to address the subject of the conversation we had Saturday. As you know, Miles has severe, potentially life-threatening, sensitivity to peanuts, tree nuts and eggs. He is at risk of a fatal anaphylactic allergic reaction. Approximately 150 people die each year due to anaphylaxis to foods. Miles has a history of aaphylaxis and allergy tests are positive for peanuts, tree nuts and eggs. It is essential that Miles have emergency medications consisting of Zyrtec, Benadryl and Epi Pen available at all times so that they may be administered immediately in case of an allergic reaction.

Avoidance of all contact with food allergens (i.e.peanut) is the only way to avoid a potentially life-threatening allergic reaction. This includes avoidance of ingestion, contact and inhalation of peanut protein. Such avoidance is a highly complex task, impossible for a child without the ongoing assistance of an adult. It is because of the very life-threatening nature of Miles allergy that it is imperative he have immediate access to an adult trained to administer epinephrine at all times.

Epinephrine or any other rescue medication or device does not necessarily resolve anaphylaxis and does not eliminate the need to seek additional emergent care. Death or permanent disability is a possible outcome any time anaphylaxis is triggered. Peanut is of particular concern since a triggering dose cannot be reliably determined, even for an individual. Total avoidance is imperative.

The Epi Pen is simple to administer, and I have no problem training the workers weekly if neccessary, as it is a quick process. I am attaching a consent to administer auto injector, as promised and will mail a signed copy to you. Additionally, California does have the Good Samaritan Protection laws, which generally protect individuals from liability who render emergency assistance in good faith, with no expectation of payment, and who hand the patient over to appropriate medical personnel (such as EMTs or a school nurse) as soon as possible. These should alleivate the concerns regarding liability.

I will also mail a copy of the Emergency Allergy Action Plan that we created with Miles's doctors, which I showed you when we spoke. It has a simple chart (for example one or two hives and no other symptoms- administer 1 tsp. zyrtec or benadryl, and watch for further reaction. All over hives or hives with other complications such as wheezing, vomitting or diahrehaa? Epi-pen, call 911 then administer zyrtec/benadryl.)

As mentioned above, avoidance of all contact with food allergens is the only way to avoid a potential reaction. If there is peanut residue on an individual's hand and they touch a surface that Miles touches he can have a reaction. This is especially relevant as many of the kids in the nursery have older siblings who attend Crosswalk where nut products are offered as treats. As Miles gets older, and becomes acutely aware of what he can not eat, we will be more at risk of an exposure from a contaminated surface such as the games downstairs or an undeclared nut ingredient. When he moves to the toddler room in a few months it will become an issue as well.

I am requesting that Crosswalk rethinks it's policy of offering candy as prizes, and offer an alternative non food prizes. At the very least I would ask that you would remove the nut candies, to reduce further the risk of a potentially life-threating allergic reaction.

Unfortunately severe food allergies are becoming more and more prevelant. Until there is a cure, I would hope that we could all work together to protect the lives of children like our precious Miles."

I was then going to add links to some web pages with further information and perhaps the In Memory page here to really bring it home.

Is this appropriate? Thanks guys!! Jaleh

On Jun 6, 2006

FYI- I am the worst speller.

On Jun 6, 2006

Milosmom, BTW I took my letter from other dr letters for 504's on this board! Don't give me the credit =) Sounds good. One more possibility, I seem to remember reading somewhere an effort to reduce use of foods as rewards in school, perhaps due to obesity? I know our school is moving in this direction. Maybe you could find some 'official' study recommending this to give other support for reducing food rewards...just thought that might help since you seemed to think this would meet with resistance. Isn't crazy how much food they always seem to be shoving at kids??? DS's preschool sunday school seemed to be BASED on food and they considered chocoate a necessity 1 week...fogive me but I don't seem to recall Jesus eating much chocolate!LOL! Luvmyboys

On Jun 7, 2006

I like it.

Question: you make only one request that I see, right? (i.e. crosswalk rethink offering candy). Is that the only change you want? Or do you have more?

On Jun 7, 2006

Quote:

Originally posted by milosmom: [b]. . . but I feel like if I can impress upon them the severity of the allergy and it's not just me be a freak that it will give them pause, and my son will be safer as a result. [/b]

Maybe you could achieve that by attaching a recent credible newspaper/magazine article about food allergies? That way it isn't "you", but rather the experts who emphasize the serious nature of PA. You might want to review the "Media" board to find one that would suit this purpose?

On Jun 7, 2006

Gail- My requests are that there be someone on hand to give the epi pen as right now it's not their policy, and that they stop giving out candy, at the very least, nut candies. I can't stop them from serving nut muffins and things like that in the cafe as they are for the adults too.

I am sending them a few links to various sites so that it also comes from the experts and not just me- in case they write me off as neurotic.

On Jun 7, 2006

I think it is a good email with the right sort of "tone", but like Gail I was a bit confused about exactly what your requests were. Maybe state those two things (Epi and no nut candies) up front as your requests and then follow up with the text you have.

Good luck.

On Jun 18, 2006

I took everyone's advice in wording the email- (thanks!) and actually heard from the nursery director this morning. She said they had a meeting regarding their policy. They can not force a volunteer to administer the epi-pen, if someone is on hand willing to administer it then fine otherwise we take our chances. So our way of dealing is to ask the volunteers if they are willing to take on the responsibility and then show them how to do it.

They will not stop serving peanuts or peanut products downstairs. No further explaination. I was annoyed but I figure he's okay in his nursery right now and we are moving in a month or two so I will just leave it at that.

I do know the director mentioned that there were two other kids who had inhalation reactions. I pray that their parents will continue to work to change policy to protect their kids.

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