Documentation of the allergy - don\'t wait

Author:
Updated:
Original:

Medical documentation of the allergy is very important. It is common to meet resistance when trying to obtain services or inclussion for kids with disabilities. A peanut allergy is definetly life threatening and is basically a "hidden" disability.

I do understand that it might not be possible to take pictures during your child's allergy reactions, but keep the camera handy. We have some of our daughter's very serious reactions documented with pictures. It is a real eye opener for a lot of people when they SEE what happens.

I don't know all the ins and outs of this mess, but first: go to a good allergist. One that knows how serious peanut allergies are - they don't all have the same expertise. The school district refused to accept detailed information from our daughter's pediatrician.

Tell the allergist that you need a very serious and detailed written opinion from him on the Management plan and Protocol for accidental peanut exposure. I asked our allergist not to specifically write it to the school as I want it for daycare, YMCA, and other classes as well.

Our allergist takes this very serious and he gave great details on what to avoid, how to avoid it and what to do when exposed. It was all very serious.

He wrote that our daughter has a typical history for peanut anaphylaxis both with contact and ingestion. There is a big difference between an allergy reaction and an anaphylaxis reaction. The allergy/anaphylaxis puts these kids at very serious life threatening reactions. Our allergist even wrote that the children are not to touch or kiss our daughter unless they have completely washed off all peanut product residue. - He is very serious and so are we - we still hit stone walls at the school, but you need to have him write a serious plan as when the school ignores it, you have some very powerful medical terms and plans in place. The schools will have to accept responsability at some point.

When you get the allergist's plan, have the school include it in the kids 504 plan. Get it all in writing.

Accidents will happen. Our daughter has twice come home from pre-school with a swollen eye (not from ingestion but from skin contact. I wrote to the school district (copied a bunch of people) about the exposures and copied the allergist on each letter. The allergist called me and was very concerned because each exposure puts her at higher risk for anaphylaxis.

A very good source of information on pre-school children is "Commonly Asked Questions About Child Care and the ADA" and can be found at:

[url="http://www.usdoj.gov/crt/ada/childq%26a.htm"]http://www.usdoj.gov/crt/ada/childq%26a.htm[/url]

While trying to understand and document our daughter's peanut allergy, I have read a few things on exposure and tests that agree with the things our daughter's allergist told us:

Tests may be false - both positive and negative. A low test result does not indicate a small reaction will occur and a high test results does not indicate a severe reaction will occur. Don't take any chances.

Our allergist basically said that there aren't levels of peanut allergies. You don't know if the next exposure can kill.

Having a peanut allergy is kind of like being pregnant. Either you are or you aren't. You can't be a little bit pregnant.

Each exposure - ingestion and/or contact increases the risk for anaphylaxis.

Please don't let a slight rash or reaction give you false security.

I do trust our daughter's allergist so that makes it easier for us to ask questions. The first allergist our daughter had was not very good and actually put her life at risk. He, also, had a problem taking a stand on peanut allergies. He would voice a strong opinion on the seriousness of the allergy, but was afraid to put that opinion in writing.

I have, also, posted most of this information under the Schools/Should schools ban, or "reduce the risk"? board.

I hope some of this helps - I do ramble on (smile).

Sue in Sunny Arizona

On May 1, 1999

Sue wrote:

>Our allergist basically said that there aren't levels of peanut allergies. You don't know if the next exposure can kill.

[soapbox on]

I'm not trying to single you out here, Sue, but if this were true, I'd be long dead. As a child, I caught colds quite frequently and seemed to always be sick. It was not until I was in my early teens that I found out I had many food allergies, peanut being the biggest one. I had a peanut allergy but not to the point that I ever had an anaphylactic reaction. And I ate peanut products many, many times during those years I went undiagnosed, never once coming close to death.

Okay, here's my confession. My son was diagnosed with a peanut allergy three years ago. The only safeguards I had in place for him (before discovering this web site in January) was to read labels. He lived a very active life, ate at ice cream parlours, restaurants, bakeries, played in activity centers, museums, playgroups, etc. In all that time, he had one accidental ingestion to a bakery product which a playgroup mom deemed safe.

Then I discovered this web site. I became more cautious with taking risks. Still, I wanted to say (and this is entirely my own opinion) I believe the world is far safer for our kids than what we can imagine in our heads with cross contamination and picking up peanut butter residue from monkey bars. Not that these things don't happen. All this is highly personal but, in my opinion, to make my son 100% safe would impinge so much on the quality of his life that it would not be worth it to him. It's almost like the indoor - outdoor cat debate. Yes, cats are safer when kept indoors all of the time. But the quality of their lives are diminished by never getting to romp in the sun and smell the flowers, so to say.

And I think the same goes for our kids. When we try and make their lives completely risk-free, we effect the overall quality. Not that I don't take this allergy seriously. But I have been wanting to say this for quite some time, and especially to the new people: sometimes too much knowledge is an undue burden unless things are kept in perspective.

What we need to remind ourselves is that very few people die of this allergy when a sound emergency plan is in place. A small percentage of our population has peanut allergies and out of that small percentage, even a smaller percentage have life-threatening reactions. Not that I want to send anyone into denial about the seriousness of this allergy, not that I want anyone not to have a sound emergency plan in place; just that we all have our own spin on how to live with it. You will have the "paranoid and proud" contingent, you'll have people doing nothing to protect their kids from cross contamination, and my goal is to find myself in the middle. And with that said if I had a kid with severe asthma or an airborne condition, I'd sure be humming a different tune.

When reading this site, take everything with a grain of salt. Even the things I say. [img]http://client.ibboards.com/peanutallergy/smile.gif[/img] Do your own research. Know that allergists have differing opinions. But please don't go around thinking you or your child might die at any minute from this malady. That mindset offers its own kind of danger. I really like that article on coping with the stress of this allergy and one of the main points was to keep a positive attitude. God, I may need to be reminded of it myself sometime but it is a goal I'm always striving for.

[off the soapbox now]

Noreen

On May 1, 1999

Sue, I'd like to thank you so much for taking the time to write about your experiences and how you're dealing with the allergy and schools. I'm going to save your message to refer to later on when my son is in school. I've printed out a lot of messages from his board to customize for our own situation.

Noreen, I'd like to also thank you for voicing something I've felt for a little while. There is a ton of good information on this web site and I read all of it to look for useful bits that will work for us. But I do agree with you about not worrying about the monkey bars... if I have to worry to that point, then I will go insane. Yes, there is probably some risk there, but I also take a risk every single time I get in the car. So many friends and acquaintances of mine have been killed in car accidents. I don't know anyone personally who has died of an anaphylactic reaction. This does not mean I don't take my son's allergy seriously, I do. I'm just trying to keep things in perspective. I have also talked with several grown adults with the allergy -- one who had it all of her life. She's dealing with it, but she never worried about the monkey bars at school.

I've seen some incredible lows since finding out about my son's allergy and in the process I've learned a little about myself. What I'm learning is how I deal with his allergy will have a great deal of influence on him. If I live in fear of every little thing that could go wrong, he will be a fearful child. If I get emotional and angry at people because they don't understand, he will be emotional and angry. Being fearful, emotional and angry will not help him deal with his allergy better -- it will make things much worse. It is very difficult for me to think clearly in these states. I want to teach him to be thoughtful and have the mental skills to make non-reactive, non-emotional choices about how to deal with various dangerous situations. So I am working on myself and how I react more than anything else... the rest will follow.

--Tracy

[This message has been edited by tracy (edited May 01, 1999).]

On May 1, 1999

Noreen,

Thanks for responding to my post. I don't feel you are trying to single me out. I'm glad that you shared your opinion.

You are correct that we should not over react. I still support our allegist's basic information that each exposure puts our daughter (not everyone is the same) at higher risk each time. I am not willing to take the gamble.

You and your son are very fortunate to have been so lucky with a minimum of safegaurds in place.

Our daughter is not so lucky - Her skin blisters when she is touched by peanut products. She gets rashes that take weeks even months to heal. These rashes leave her open to secondary infections. I do understand that she may be the extreme, but again there are no guarentees what each reaction will be like.

I understand your feelings on too much knowledge being an undue burden unless things are kept in perspective. I, also, believe that each of us has the right to sort through and evaluate all of the information that is available and shared about the peanut allergies.

As adults, we must try to sort out and use what is right for our kids. Each situation is different so I don't want anyone else deciding what I need to know about my child's allergy.

Being well informed will help all of us from "thinking that you or your child might die at any minute from this malady."

I don't think anyone on this board has overreacted (from what I have read). There are a lot of questions and concerns being shared, but it seems that we are all trying to minimize our kids exposure to peanut products while maintaining a good quality of life for each of them.

Remember, most of us are not talking about a world wide ban on peanut products. We are asking for information on ingredients of food that our kids consume. We are asking for a peanut free classroom, a single table in a lunchroom, kids to wash their hands after eating, etc. None of these requests cost money nor do they cause a hardship to anyone. If a school or preschool is willing to help reduce the risk of exposure to peanut products by "banning" it, I think it is safe to say that we are very grateful for their concern and help.

All parents have the right to say that they don't want any special modifications or reduced risks for their peanut allergy child. On the other hand, all parents have the right to say that they do want the assistance and have a right to ask for help.

Parents of children with life threatening allergies ask for basic modifications to help prevent an allergy reaction because we do not know if the next exposure can kill.

There will still be times that I might over or under react, but with the information that is available I will be better prepared when the next reaction happens.

Sue in Sunny Arizona

On May 2, 1999

Hi:

This topic (peanut allergies) certainly does evoke a lot of different opinions and emotions from people. I would like to put forth mine. First of all, I have come to the conclusion that the more I read, the more informed I become, and with each reaction my son has, I approach this topic from a slightly different view. The way I feel next month about this topic may have shifted a little from the way I feel today. I have been on this website for quite a while and have probably read the equivalent of "a few good books" worth of information. Having said all that, this is the point that I am at today on the subject. I love my (peanut allergic) son as much as you all love your children, and as much as I love my other 2 children who are not allergic. But looking at the whole picture of Kyle's life as a five year old, I try to not let his peanut allergy become more than what it is or needs to be. And yes, his is a life- threatening allergy too. He had a very close call when he was 3 1/2, which is when we found out that he was so severly allergic to peanuts. We do take precautions; he has an Epipen, his preschool class is peanut-free, we never bring any peanut products into our home, we are careful about whose house we let him go to, and make sure that they understand the seriousness of this dreaded allergy. But we do let him play at the park, go to birthday parties, and do as much as the other kids whenever possible. I want Kyle to remember his childhood for all the happy times he had, not to look back on it and feel that he was sheltered or over-protected. I feel so sad (and mad sometimes) that he was given this horrible allergy, but I truly believe that there needs to be a balance in not letting the allergy carry MORE weight than the need for him to have a fun and wonderful childhood.

Please understand that this post is not to put down anyone else's beliefs or the way that they deal with their own child's situation. I just wanted to share mine.

------------------ Colleen

On May 3, 1999

I too find this allergy overwhelming at times. We don't allow peanuts or eggs in our home and Sean's 3 other siblings know that they must make sure that their friends don't bring anything over. Like everyone else, I too want Sean to lead a full and normal childhood like my other 3 children. However, after taking him and my son tommy to dicovery zone the other day, I know that this may be difficult. While playing in the small kids section, I noticed a father giving his 2 year old daughter a pb&j sandwich. She was eating it as she was playing in the balls and climbing tube sections. It was at this time that I decided to leave. Unfortunately, Sean will not be going back to DZ. He will just have to lead a full childhood in my backyard on our little tykes gym set with children whose parents are aware of his allergies. After experiencing Sean's anaphylaxis (slipping into unconsciousness), I would rather be overprotective with him than not with him at all. I know that I can't control what other people in society do, but I can control what my family does. Our #1 goal is to keep Sean safe. Lynda [img]http://client.ibboards.com/peanutallergy/smile.gif[/img]

On May 3, 1999

Thanks, Sue, for your reasoned response. Each of us brings our own personality and past experiences when it comes to administering a peanut allergy. I know what it's like to be on the other side. I was diagnosed with other food and pollen allergies along with peanuts. I went for one year without eating any wheat products as a teen (you can imagine what a variety that must have been) and I have sat at those special tables eating those special meals. I understand first hand the isolation and deprivation that food allergy brings.

And after all that, I'm not choosing the 100% safe path when administering my son's allergy. I'll give you an example. My son is only allergic to peanuts. He has eaten all forms of tree nuts for over three years and has never had a reaction. He's a picky eater and tree nuts give him some extra protein. Once again, you might say we are "lucky" but I tend to think that although cross contamination issues are very real, they are not as pervasive as some might think.

To keep my son 100% safe, I should never give him a dessert that I don't bake. Like I said in a previous post, he has dined at more restaurants than most kids -- has probably eaten 300 different commercial baked good products and reacted to one. And that one mistake would not have happened if I were the one buying the dessert (and this was not a cross contamination problem).

And, at the same time, I have a healthy respect for avoiding chocolate products due to cross contamination. I also won't be taking my son to either Chinese or Indian restaurants any time in the near future.

One of the strengths of this site are the Alerts, Food Manufacturers, Labelling, and Restaurant sections which I read often. We need to work with manufacturers and eating establishments to reduce the risk of cross contamination. We might get further with them if we use scare tactics but I have chosen not to illicit compliance out of my own son in that way. He does not know that he could possibly die from an accidental ingestion. [Personally, I think that information is too much for a small child to bear] However, he does know what an anaphylactic reaction is like and he knows no peanut is worth having that experience. The allergy is a sideline in his life, not a focus. He is allowed to do everything other kids do; he just can't eat peanuts or peanut products.

I'm sure every one of us shudders every time a child or adult dies of this allergy. Where was their Epi-Pen? Why were they eating there in the first place? We can go on and on, consoling ourselves that our kid will be different. We each have our own game plan, hopefully tailored to our child's temperment. My main concern with being too strict is that it invites rebellion. If I tell my kid he can never eat in ice cream parlours and he goes off and eats at an ice cream parlour and doesn't have a reaction, will he think Mom was wrong about everything else, including the importance of carrying the Epi-Pen at all times?

I sure don't have all the answers. I might even change my strategy later in the game. All we can do is observe our children and go with that gut feeling inside as to what is best for them and for us.

Noreen

[This message has been edited by Noreen (edited May 04, 1999).]

On May 5, 1999

I have just read over everyone's post and find value in each opinion! We are unsure what level of reaction Spencer has to peanuts as he has never been exposure (we found out at 6 mos before he was off formula/baby food) but it has been very helpful to learn about the life experiences from all of the different families. Unfortunately, I can not say that I did not know someone who died from peanut or other allergies. In fact, there have been two, a c0-worker in one of our county offices (from peanuts while eating at a mom and pop restrauant) and the brother of one of my staff members (unknown allergy to something in a famous sub shop).

Our family has decide to take as many precautions as possible (as the doctor has indicated that we have every reason to believe the allergy is severe). If we happen to get exposed and the reaction is mild we may reconsider our plan but until then I am going to do everything in my power to keep him peanut free.

The great thing about life is that we are all free to make our own decisions concerning our children! I am glad to see we are all doing this. If there was one right answer for everyone we wouldn't need this web site!

Take Care!

------------------ Kelly M Another Mom in Michigan

On Aug 11, 1999

Noreen

Your opinion on risks and prevention is fantastic. I have the PA, and I know it is lethal. I also know that my chance of having a reaction is very low.

I seldom carry adrenaline on my person, just keep it in the cupboard at home and in the First Aid kit. If I eat out at a restaurant, or go to a remote location, I will take it, but other than that I don't bother.

When I have a reaction, I usually have 10 minutes before my breathing is so bad it almost stops. In that time, as an adult, I can drive to medical help in whatever vehicle I choose. When your life is in the balance, you become very determined to save it!

I choose to not carry adrenaline with me. I choose to live a normal life. If one peanut decides to ruin my day, so be it. I was born with this allergy, and I can do nothing about it. Fear is useful when in danger, but when in safety it is counterproductive. I may not live for a very long time, and my death may hurt those who love me, but like smokers, fat people, heart attack victims, daredevils, and others - I choose to take a risk, and I am able to live a life without stress.

Epipen is wonderful, so is the epipen belt. As adults, carrying this cumbersome device to an office job, or to university, or to whatever, is inconvenient and often unnecessary. Sorry if my attitude offends some people - i understand that children, and those who are hyper hyper sensitive to nuts would not apply to this. As for the rest of us - make a choice and stick by it.

Take care everyone!

Related