How restrictive should we be?

Posted on: Tue, 10/26/1999 - 6:49am
vicky's picture
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Joined: 07/12/1999 - 09:00

Hi,
We have a three-year old son who is allergic to peanuts, eggs, dairy, and tree nuts. His peanut IgE reading was above 100 and we were told by our allergist that he is at a higher risk for having anaphylaxis if he is exposed to peanuts. So far, his only reaction to peanuts was when he was one year old and had a very small flat rash around his mouth when I gave him tiny amount of peanut butter. My husband and I have been arguing a lot about how we should handle our son's peanut allergy. I would like to let hm grow up as normally as possible and are trying my best to keep him away from peanuts. We have no peanut products in the house and his classroom has a ban on peanuts. But my husband wants to go to the extreme. For some reasons, he has a fear that my son may not live to his adulthood because of his PA. I have agreed that we stop eating out at ANY restaurants. He frowns on my buying anything baked goods without any ingredients (such as muffins). He now is proposing that we only give our son certain foods and stop introducing new foods to him. For example, I gave our son some cookies that was safe for him to eat and he loves it. But my husband thought it was a bad idea because now he likes cookies and will be confused about what types of cookies he can or cannot eat. My husband says this would be the greatest gift we can give to our son by teaching him the idea early on in his life that food is not for pleasure and he should only eat a selective of things his entire life without feeling that he is missing out on something good. We met someone last year. This erson was allergic to a lot of foods. He would just not join the group for any kind of eating events and often spend time alone. My husband wants our son to behave that way around food. I do not want our son grow up in such a restrive environment but am having hard time convicing my husband. Afterall, my husband's intention is to keep my son alive. I just don't know how to tell him to relax. I was wondering if some of you who have older PA children or PA adults would give us some suggestions. I told my husband that I was going to post our dilemma and I will make sure he reads this. Thank you all in advance! -Vicky

Posted on: Tue, 10/26/1999 - 7:54am
CathyT's picture
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Joined: 07/11/1999 - 09:00

Vicky-I am a 38 yr old PA mom with one child who is PA, and one who is not. I am a class 6 allergic person. Of all reactions I have had, only 2 were from what I believe were mislabelled products. I do read all ingredients, and buy only from big name brands, but my experience has been that as long as you stick with those, you're ok. As far as restaurants, I eat out all the time, but I have a select few where I know the owners, or chefs, I tip VERY well, and I don't eat in chinese, thai, etc. restaurants, or restaurants that have a real eclectic menu. I understand your husband's fear, but he has to be realistic, or you will be raising a fearful kid. Food for thought for your hubby, once your son is a teenager, if he has the slightest rebellious streak, he will try foods on his own, not wear his medic alert bracelet, and want you to have nothing to do with what he eats (I did all of the above as a teenager). So, instead of the "hover and smother" method of parenting, as I used to scream at my parents,
educating him and having him take responsibility for his allergy make more sense. From all that I have read about parents who just find out about this allergy,
they usually either initially overprotect their child, or go into denial. Hopefully you and your husband can reach a compromise until your son is old enough to tell you what he wants to do.

Posted on: Tue, 10/26/1999 - 11:48am
Anna's picture
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Joined: 07/20/1999 - 09:00

Hello Vicky and Cathy T.
I'm a PA adult who is also anaphylactic to tree nuts, sesame, eggs and fish (among other, lesser allergies).
Having gone the route of eating at restaurants and consuming processed foods for many years during my teens and young adulthood, severe reactions have forced me to cut off these activities. I've experienced anaphylactic shock in *several* supposedly safe restaurants where I'd previously been a regular customer and had carefully questioned the wait staff every time I ordered. These occasions have involved ambulances pulling up to the restaurants in question, causing more social embarassment than a safer strategy would have.
I also consumed such items as store-bought cookies, breads and canned/frozen foods, first having called the companies re: cross contamination. The occasional severe reactions continued despite assurances of safety. I've had to administer the Epipen -- and even this did not *completely* reverse my laboured breathing.
I could go into much more detail, but I'll simply say that these continued allergic reactions led me to question the risks inherent to the so-called 'freedom' of eating socially and appearing 'normal' to others. At what cost to my health was I choosing to fit into the normative social world? I then chose to accept the reality of my condition.
I now prepare all of my foods from scratch. I buy basics such as flour, fruit, milk, vegetables, meats, etc., (I still telephone the companies in question.) and bake homemade bread for myself and my husband. I bake cakes and cookies, and prepare homemade ice-cream.
I no longer eat at restaurants, and am very careful about visiting peanut containing homes.
I lived the careful, yet socially 'normal' life for many years, and paid a price. It was pure random chance that kept me from experiencing a fatal reaction, especially given multiple food allergies, which I believe call for extra caution.
I'm not in any way trying to alarm you, Vicky. I know of many parents who do the best they can with their PA (and multiply allergic) kids. But it should always be remembered that with the openness to restaurants and processed foods comes accompanying risk. This might mean that allergic reactions take place -- though I hope they don't.
Food companies sometime make mistakes, and even the best restaurants (in my experience) with which you are familiar can make very serious errors. Have they, for example, checked into their suppliers' allergen containing foods?
The bottom-line here is that emergency readiness must be ever-more strict where risk is heightened. I'm living the kind of life that your husband is advocating, and I can't say I'm unhappy or socially ostracised, though it has taken some adjustment. There's a choice to be made either way, and neither are easy ones.
Just thought I'd help with my 2 cents as a PA adult.
Good luck. [img]http://client.ibboards.com/peanutallergy/smile.gif[/img]
[This message has been edited by Anna (edited September 02, 2001).]

Posted on: Tue, 10/26/1999 - 10:20pm
Christine's picture
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Joined: 02/03/1999 - 09:00

Vicky,
You are certainly facing a tough dilemma. I can only tell you what I "choose" to do or what I am capable of doing. My son, almost 5, is peanut and egg allergic. It is not my choice to work full-time, but I must. Therefore, my son has been forced to be in a world, at a very young age, that is loaded with his allergens daily. I've have done the best I can for him in my situation. His classroom is peanut free; although, there are no guarantees that every product that enters his school is free from cross-contamination. I am trying my best to teach my son how to deal with his allergies on his own. I do want him to have a "normal" life. I want him to be able to go to college, and live there if he wants to. I believe that by placing him in a vacuum or a bubble will not prepare him for the day that he has to be alone. Yes, it will give me a 100% certainty that he will actually live to see his college days, but will he be equipped to deal with it mentally and socially. This is important. I have NEVER seen overprotectiveness work in any type of problem. I can think back to my high school days when I had friends whose parents would never let them out of the house. They almost always rebelled, lied, and got into worse trouble because they couldn't handle themselves when they got out. My family eats out (with my PA/egg allergic son) at least 2 times per week. We always stick to pretty much the same places, check out the ingredients back in the kitchen, and always order my son the same foods. In four years we have never had a reaction except for the one time that I did not check the ingredient of a product that I was eating and let him eat it. My own stupidity. The restaurant would have easily told me the ingredients had I asked, I just assumed (it was an egg product). We are pretty much the same way with storebough snacks. He eats the same ones all the time.
Just curious though, what storebought cookie did you find safe for your son? I can find nothing that I am comfortable with since my son is peanut/egg allergic. The only thing I've ever given him is Oreos.
My son now questions every new food that is offered him. He doesn't trust me or his father. If I bring home a new snack he asks me if it has eggs/peanuts in it. I tell him "no" and he still doesn't believe me. He actually has to see me read the label. Incidentally, this behavior just started in the last 3 months and he is now becoming very aware of his allergies. I take this as a positive sign.

Posted on: Tue, 10/26/1999 - 11:39pm
Mel's picture
Mel
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Joined: 09/21/1999 - 09:00

My husband is PA and has been since an infant. When he lived at home his mom cooked everything for him and they didn't eat out. As he became a teenager that is when the reactions happened more often. He was in a hurry and would grab a quick bite at McDonalds or where ever the group of kids were eating. As a teenager he would ask questions about what was in it, but you never think something bad is going to happen. Due to the exposure's his allergy has gotten very serious. I have known him since we were teens and was very aware of his allergy, but never thought anything would happen until I saw him get rushed to the ER. Then we would ask him can you eat that, or are you suppose to eat that. He would always say " It's fine, I checked"
Now that he is a adult he choose's not to eat anything unless we make it. His last reaction almost cost him his life. Some of his family ask how can you not want Pizza or McDonald's. His reply is " It's not a matter of not wanting to eat it, it's a choice to stay alive.
Protecting your child is one thing, but to be overprotective may send your child to try things just to see if what you say is really true, and that could be fatal.
Take care
Melissa

Posted on: Wed, 10/27/1999 - 12:59am
Tammy Lynn's picture
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Joined: 06/26/1999 - 09:00

Vicky-I am the mom of an 8 year old PN allergic child. My advice will parallel many of the others. Smothering your child will only bring about rebellion. Educate your child about this allergy. Teach your child to read labels and know which foods are safe. (We still read those labels too.) Elizabeth now reads labels behind us and questions everything she eats. If fact, she caught a peanut ingredient one day that my husband had missed! This is your child's life and as much as you want to be there and protect them forever, you will not always be there and your child will need to make decisions on his own based on what you have taught. Elizabeth knows how dangerous peanuts are to her and she has even been taught how to use the Epi-Pen herself. No matter which type of environment your child is brought up in, at some point you will have to let them go on faith but also with all the knowledge you have enstilled in him.
Take care.

Posted on: Wed, 10/27/1999 - 5:25am
brenda's picture
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Joined: 01/22/1999 - 09:00

Anna,
Could you please comment more on what were the types of store bought foods- canned and frozen foods caused you to have severe reactions (presumably due to cross-contaiminataion?). I don't need to know brands, just wondering what kinds of foods they were...vegatables, fruit, etc.
Thanks.

Posted on: Wed, 10/27/1999 - 7:07am
vicky's picture
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Joined: 07/12/1999 - 09:00

Thank you all for all your replies!
Christine, my son loves the Keebler brand's Vienna Fingers. It is a "creme filled" sandwich cookie but it has no milk, no eggs, and no nuts!

Posted on: Sat, 10/30/1999 - 3:06pm
Lara Crowe's picture
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Joined: 08/31/1999 - 09:00

Dear Christine:
I am struggling with the same question over and over. How protective should I be? I keep thinking that if I'm not protective enough my son will die, and if I'm too protective, he'll will be unable to manage in society. In other words, being really protective is physically safer, but I'm not sure it's psychologically safer. I think isolating a child too much could result in a very depressed and unhappy grown-up. The child wouldn't learn how to cope with the allergy in public places. As a teen-ager, they wouldn't know how to interact with other teenagers. As an adult, they wouldn't have the social skills needed to get and maintain a job. I also fear that depression could be a serious problem later on. Maybe you could mention some of these aspects your husband.
So I keep aiming for what I call low risk situations. For example, my son is in Tae Kwan Do. I love it because no eating is allowed in the studio! So, he gets to meet children his own age and learn a skill, and is in a situation of low risk.
Good Luck. I think this is THE question that troubles the parents of PA children the most. How careful is careful enough and how careful is too careful. I don't know if you are religious but sometimes, the issue becomes too much for me and I have to let go and put it in God's hands.
Lara

Posted on: Mon, 11/01/1999 - 10:11pm
Donnamarie's picture
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Joined: 11/16/1999 - 09:00

I also have a 5 year old PA son. He is severely allergic, and even reacts to the smell of peanuts. We are extremely protective about WHAT he eats, but we include him in all the decisions. We tell him that peanuts "will make him very sick"--and he's had enough reactions to know what will happen (and not like it!) So we mostly education him. We teach him to ask a grown up to look at labels, we point out all products that obviously contain peanuts (Reese's), since he's young he can only eat food that we give him - or another trusted friend. I also teach him that it's HIS job to keep himself safe--by asking a trusted grown up to read labels, etc., so he feels like he can control the situation. As far as growing up "normal", we live in a good era! So many people have dietary limitations because of religion or medical reasons, and it's really not that unusual. We have vegetarian friends, diabetic friends, another PA friend, etc. Also, I always tell my son "everyone has something"--he has food allergies, his friend is diabetic, another friend might not be that good in sports, etc. It teaches him to be tolerant of others, and not feel sorry for himself.

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