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PostPosted: Wed Sep 20, 2006 1:18 pm 
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Joined: Wed Sep 13, 2006 10:59 am
Posts: 63
Location: Ohio
I am new to all of this..

I was talking to a mom the other day (who has no allergic children mind you) and was telling her about how I am just trying to figure out how we are going to change our lifestyle to make sure Sam is safe (e.g., do we avoid all restaurants, can we still take him to the park safely, baseball games, etc, etc). And her comment to me was 'well you can't keep him in a bubble, you need to make his life as normal as possible, otherwise he will be miserable" Then she proceeded to say "look at people with bee sting allergies, it is not like they never go outside, they just take precautions so if they come in contact they are prepared"

is this how you see your approach to allergies? That you probably can't eliminate exposure you just do your best to predict situations to try to keep him safe and then have a response if something goes wrong? I just hear so many people talk about not even going out to eat or the park that I wonder- am I going to make my kids crazy if I try to control his environment too much? He is still little right now but I am concerned about how I approach him and his world. I just don't want him to grow up scared of his own shadow?

Any advice?

_________________
2.5 year old: allergic to wheat, dairy, egg, peanut, oat, turkey, and cats
5 year old: no known allergies
Husband no known allergies
Me allergy to morphine only


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PostPosted: Wed Sep 20, 2006 4:03 pm 
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Joined: Fri Jan 13, 2006 3:29 pm
Posts: 218
Location: Ontario
We've been dealing with DD's allergies for about a year now and have gone through various stages. When we first found out about all her allergies DH and I were terrified to feed her or to introduce new foods to her since we had witnessed two severe reactions. We were afraid to take her to other people's houses or grocery shopping.

When I first started my research on food allergies I started focussing on all the negative things that had happened to people with food allergies which made things even more terrifying. But I've now been focussing on the more positive experiences others living with food allergies have had and it's helped me become more prepared.

We never leave our house without her Epipen (x2), Benedryl, wipes, health card and safe snacks. I do let her play in parks and don't worry as much as I used to. I don't get as tense when we got to someone else's house to play either and as she's getting older I'm not as worried about food being out that "may contain" (If it DID contain then I'd ask it to be put away and no one has ever taken offense to this). She knows some information about her allergies. We've back off a little because I think we were becoming obsessive about it and now we just talk about it whenever it comes up. But not every minute of the day.

We've also been fortunate that our family & friends have been very accomodating for us. None of them want to be responsible for an accidental exposure, but we still take all the necessary precautions.

I'm not sure if this helps at all. There are lots of great people on this site that will likely have some great advice for you!
J

_________________
4ye old DD allergic to sesame, peanut, raw egg , and mulitple environmental & seasonal allergies

2 yr old DS -no known allergies!


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PostPosted: Wed Sep 20, 2006 4:04 pm 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
It's funny - and I will reply seriously later on when I have more time - but my first thought was, you're more likely to go crazy than your child. :lol:

I find that most parents of FA kids are pretty good at trying to creating as normal a life for their child as is possible - given the restrictions and precautions and vigilance that are just part of being a food allergic family.

It's the parents who go a little crazy trying to hold it all together. :?

I will reply in more detail soon - gotta run - but rest assured, you will make this work. And (this is just my personal opinion), I wouldn't really take that kind of advice from someone who isn't living with food allergies. Well, I would listen, and keep it as potential advice to consider, but I would take it all with a grain of salt. Most people who are not living with food allergies 24/7 really don't get it.

K.

_________________
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


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PostPosted: Wed Sep 20, 2006 4:08 pm 
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Joined: Thu Sep 22, 2005 11:39 pm
Posts: 1141
Location: saskatchewan, canada
It is hard when they are little. It gets better. They learn not to stick things in their mouths eventually. Activities for kids who are little are tough when their peers are all bottle drinkers...and tend to spit up. They get older and eventually activities are available without food that are fun. My youngest is now in ballet and gymnastics. My oldest is in jazz, tap, gymnastics, and swimming. We are probably doing skating in a few months as well. The girls have friends who understand. They come over to play, wash their hands, and if they get hungry eat snack here. My girls go to a birthday party next week and I am bringing the cake. Our real friends clean up their food mess in their houses if they invite us over...which they do.

Yes, you really do have to control the environment when they are small. Yes,. it does mean we miss out on pot luck events and BBQ's. We do other things together as a family. We go for bike rides... we prefer to play in our yard together...we go mini golfing...we do lots. As someone else put it we eat to live we don't live to eat. We are so much the better off not living our lives all consumed by food. If we did not have allergies we might spend an evening in a restaurant...now we eat at home in 30 minutes and have time in the evening for quality family time.

Quote:
'well you can't keep him in a bubble, you need to make his life as normal as possible, otherwise he will be miserable"


Well I can tell you that I have heard a few bubble comments in my day. My children homeschool. My children live in a loving SAFE home. They are involved in activities...have playdates with various kids. They have friends with allergies, neighbourhood kids, and friends who homeschool. We school efficiently and have a lot of time for enjoying life. We focus on what we CAN do safely (which is a lot) and don't sweat the stuff we choose to avoid. Trying to make his life "just like everyone elses" will only focus on what he can not do because what everyone else is doing involves food a lot of the time. Let him live Sammy's life. Teach him to swim, skate, ride a bike, play in the yard, enjoy sports, family game night, play with RESPECTFUL kids etc. etc. Then he will not be miserable.

_________________
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.


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PostPosted: Wed Sep 20, 2006 4:21 pm 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
And to be honest, in the beginning (almost 6 years ago now....) when we were new to allergies, had 2 kids with allergies up the whazoo -- a number of of them life-threatening, and were still figuring out what they were allergic to, we found that the easiest way for us to cope was INDEED to keep them in a bit of a bubble. Except that I thought of it as a cocoon. :)

Keeping a child in a cocoon of safety when there is nothing wrong with them is probably not a great idea. Keeping a child in a cocoon of safety when you are still figuring out HOW to keep him safe because he has life-threatening allergies is not a bad idea, in my opinion, if it does indeed keep him safe and you don't go overboard.

It's all a matter of perspective.

K.

_________________
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


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PostPosted: Wed Sep 20, 2006 5:16 pm 
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Joined: Tue Sep 12, 2006 8:25 pm
Posts: 233
Location: Winnipeg
I love Karen's "cocoon" analogy. I just got a "you can't keep them in a bubble' comment the other day, and that would have made the perfect response.
We DO have to work harder to keep our kids safe. It feels like I've been at the school almost as much as my sons have since they started grade 1 :lol: , negotiating and advocating for a plan to keep them safe (our school is not peanut free). I'll be there again in about an hour to ask questions about the upcoming "apple day" (will there be baked goods? what is their plan to keep my sons safe WITHOUT excluding them?). We do have to pass up on some occasions (pot lucks) or bring our own safe foods. We do have to spend time researching, and asking questions. We do have to be vigilant and prepared. These things all add up to basic safety for a severely allergic child. Don't let people make you feel like you're being silly, or fussy, or over-protective. They just don't understand.
Each family seems to find a balance between careful and crazy that works for them. We figure it out day to day, and meanwhile my sons are doing great. They've been involved in lots of activities, from soccer to art lessons to skating. They have lots of friends. We have most of their play dates at our house, because it's easier and safer, but there are a couple of other parents willing to take them on, epipens and all (which I really appreciate, having an anapylactic child over to play must be a little intimidating). We do go to the park, zoo, carnivals, birthday parties, vacations etc. We take our epipens, benadryl, puffers, wipes and our own safe food (I bought a BIG purse). And we have fun!!!
My boys are very rarely worried or scared about it, but when they are we talk about it, and go over the plans we have to keep them safe. We explore all the "what if's" together, and try to help them to feel empowered. I think that they feel proud about being so brave.
So hang in there. It is possible to be safe, but to still let him have an active, fun filled childhood.

_________________
1 son allergic to eggs, peanuts, green peas, chick peas, lentils and tomatoes
(avoiding tree nuts and most other legumes too)
1 son allergic to eggs, and has outgrown peanuts
Both with many environmental allergies, asthma and eczema


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PostPosted: Wed Sep 20, 2006 7:20 pm 
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Joined: Sat Mar 04, 2006 1:30 pm
Posts: 134
Ilovesammy,
As you read the posts from this website and as you talk to other parent's of allergic kids you quickly realize that there is a broad spectrum of how families keep there kids safe. It really is just coming to terms with your own boundaries and a lot of this comes from trial and error. No one way is right. The one recommendation I would make is that combine your decision making with the science that is out there surrounding food allergies and cross contamination.
You had also posted recently about managing an older sibling who has no allergies with a younger one who does. Although my older son has a peanut allergy my younger has many others. I really struggled with do we change the older one's diet and food choices. In the end we compromise, I have no eggs in the house but I do have dairy. We have a crisper in the fridge that contains the dairy products other than the milk. I can't expalin why we have no eggs yet I allow dairy, once again I think it comes down to adapting to what you feel you can manage.
I wish you the best of luck. As others have said it does become easier as they get older.
I was playing batman with my two year old the other day and we were pretending that a slipper was a bat snack. He asked me if it had milk in it, when I said no he pretended to eat it.

Good luck to you
Stephanie


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PostPosted: Wed Sep 20, 2006 9:08 pm 
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Joined: Thu Feb 23, 2006 11:37 pm
Posts: 100
Location: Nova Scotia
ilovesammy,
You will find the balance that's right for you and your kids. It's your comfort level, not anyone else's, that you need to meet.
Of course, you want your kids to live a 'normal' life. But to feel normal, you need to feel safe too.
You will arm yourself with knowledge and listen to your instincts, and you will find a way to balance both.
You will find some periods of higher stress, then things will smooth out a bit. When the higher stress happens, it's important to recognize what it is. You aren't going crazy or being overly-protective, you're just re-assessing a situation. It's like your brain needs to take inventory of the situation every so often, and make sure your bases are still covered. That's a good thing. You want Sam to be safe.
If there is a support group in your area, I would highly recommend going to some meetings. You will soon find out that what works for one family, does not work for another. Even though we are all linked by a common thread - food allergies - each family is unique. I find this has helped me to feel more confident in my decisions.
There are a lot of great books to help too. I like "Caring for Your Child with Severe Food Allergies: Emotional Support and Practical Advice from a Parent Who's Been There" by Lisa Cipriano Collins
The mom who gave you the advice, maybe doesn't realize that a blanket answer doesn't really work in the case of food allergies. You will need to evaluate each individual situation as it arises. This can be tiring. But it gets easier!
It is obvious you are going to be okay with this, because you are thoughtful and concerned and looking for answers. You are asking good questions. I think the fact that you are concerned about 'balance' and not making your child too afraid, means you will do just fine.
Karen wrote something in another thread, I am mis-quoting here but the thought stayed with me and I have found it helpful: There are a lot of things that make up your child. Food allergies is only one part of his life.
When things start to feel a little overwhelming, I try to keep that in perspective.

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


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PostPosted: Wed Sep 20, 2006 9:16 pm 
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Site Admin

Joined: Mon Feb 07, 2005 6:39 pm
Posts: 2946
Location: Toronto
You guys give some great answers - love the "cocoon" image and twinmom's "balance between careful and crazy". :) Ain't it the truth.

I'm with those who advise that you'll find own balance. As someone who has adult onset anaphylaxis, I think this applies at any age. If you're just learning to cope with allergies, don't try new things until you're ready. After anaphylaxing, I wasn't keen to rush out to a restaurant. But now eating out is fine, provided I'm careful about where I eat and what I eat.

You'll want to teach your child - not to be paranoid - but to have respect for his limitations. There's a difference. And he'll also develop his own comfort zone. I feel fine in a restaurant with a kitchen that understands cross-contamination, but am uneasy at a ball game (peanut allergy) - I'd simply rather not be around so many shells.

I think you and he will find your balance - you obviously care enough to try not to be over-protective, but nor are you likely to be foolhardy.

By the way, if you want to read about three families coping with multiple allergies, check our archive (look for the red tab on the homepage) for an article called "In Control". I thought some of the families in that one had great ideas.


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PostPosted: Wed Sep 20, 2006 9:20 pm 
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Joined: Thu Mar 03, 2005 9:38 pm
Posts: 1643
Location: Toronto
ilovesammy wrote:
Then she proceeded to say "look at people with bee sting allergies, it is not like they never go outside, they just take precautions so if they come in contact they are prepared"


Why do they always pick on me? What did I ever do to them? :shock:

Since I have food allergies we do not eat in restaurants. My son has no food allergies, and on very rare occasions his dad will take him to McD's, but I don't think he has ever eaten in a *real* restaurant. Somehow that doesn't upset me. If the only place a kid can't go is a restaurant, well, that's a pretty big bubble he's living in. :lol:

As for the bee sting allergy -- that woman has NO IDEA how much is involved in keeping my son safe. Meetings with teachers, very few people I can trust to leave my child with, places I won't take him because of the risk of insects. One year I spent two weeks making phone calls to ensure my son would be safe on a school field trip (they were going out in the woods).

He and I share our bubble. And we're very happy and healthy here. ;)


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PostPosted: Wed Sep 20, 2006 9:39 pm 
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Joined: Wed Sep 13, 2006 10:59 am
Posts: 63
Location: Ohio
Wow you ladies are awesome! Such wonderful advice so quickly. I am so happy I found this website, it really helps to bounce the million thoughts in my head off of people who really understand.

I am really running to try to keep up. Just today I was thinking about the rice cakes I have been feeding him. I checked the ingredients and everything but I hadn't thought about calling the company to find out whether the food could come in contact with peanuts (as an example) during processing.

But it is great to hear that many of you have been able to strike a balance and have a normal life for you and your kids. I am like any other mom that wants their child to feel like every other kid. But I like the advice that they just need to recognize their limitations however, their food allergy doesn't have to define who they are.

Catherine, thanks for the book suggestion. I actually have that book sitting right next to me but haven't found the time to read it yet. I will make sure I do!

Thanks again for all of the great words of encouragement.

_________________
2.5 year old: allergic to wheat, dairy, egg, peanut, oat, turkey, and cats
5 year old: no known allergies
Husband no known allergies
Me allergy to morphine only


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PostPosted: Wed Sep 20, 2006 10:38 pm 
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Site Admin

Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6463
Location: Ottawa
Great answers! Personally, we don't eat at restaurants because it just isn't enjoyable. We have a couple of places that work for us in the event that we can't get home but we prefer to eat at home.
We are control freaks in my family so we prefer to control/limit the food our daughter comes in contact with. We also are big on providing her with the tools to protect herself. We taught her not to eat anything unless we ok's it; just as we would teach her not to put her finger in an electrical socket.
We go to foody events/celebrations and bring her food. All of our friends are aware and respect or tolerate our issues around food.
I say the EpiPen is like a fire hydrant. It's a useful too in an emergency and I want one avaiable at all times. But, do I play with matches? No. Do we BBQ? Yes.

_________________
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


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PostPosted: Fri Sep 22, 2006 7:54 pm 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
If you go to

http://www.epi-man.com/keck_slides&notes_7March06.pdf

you will see the presentation that I did for Allergy Expo (May 2005) called A long and winding road... The psychological impact of managing children’s asthma and anaphylaxis: Coping strategies for parents.

I updated it in March 2006 because a journalist wanted some info about how our family has coped with allergies, and I just added a few bits of info now to the Epilogue at the end.

Maybe it will give others some ideas. I welcome any feedback. :)

K.

_________________
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


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PostPosted: Fri Sep 22, 2006 8:25 pm 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
I also wanted to add: I've just finished reading Stories from Parents' Hearts: Essays by Parents of Children with Food Allergies and I highly recommended it to ANYONE with a child with FAs.

Even after all these years of dealing with severe FAs I found it really worthwhile. Very validating and very interesting to see how different families have coped.

It's available from the AAIA ( www.aaia.ca - specificially http://www.aaia.ca/ENGLISH/Order_Forms/ ... ly2005.pdf ) for $18.

That book plus Caring for Your Child with Severe Food Allergies by Lisa Cipriano Collins - see http://tinyurl.com/j9r6q - are must haves for the personal library of any parent of a child with FAs, in my opinion.

K.

[Addition - oops - didn't read the earlier posts before I posted the info about the second book - but it's good that everyone agrees that Caring for Your Child is a great resource!]

_________________
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


Last edited by KarenOASG on Tue Sep 26, 2006 1:24 am, edited 1 time in total.

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PostPosted: Fri Sep 22, 2006 11:11 pm 
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Joined: Sat Mar 04, 2006 1:30 pm
Posts: 134
Karen,
I really enjoyed reading your presentation. Your insights rang true on so many levels for me.
We share simliar stories with accidental milk exposures and learning systems to prevent accidents. I too have no joined my child's preschool board of directors so that I could become involved in making the experience a safe one for my child. For those of you that have not looked at the link please do, it translates the journey into words.
Stephanie

_________________
myself -Shell Fish, asthma, environmental allergies
Husband - Environmental allergies
7 year old- peanut, environmental
5 year old- eggs, nuts, fish, peas, environmental, and asthma.


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