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 Post subject: feeling sorry for myself
PostPosted: Thu Jul 02, 2009 8:53 pm 
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Joined: Fri Oct 10, 2008 9:40 pm
Posts: 2034
Location: ottawa
I really thought I had a handle on our son's allergies (mentally I mean) .
I have kept him away from new foods in order to stop his constant reactions (as they were not only hard on him physically and mentally but also were flaring up his asthma ...not to mention the non stop ear infections and painful liquid in his ears since the beginning of April... assumed by dr's due to allergies). This is all difficult on myself, my husband and our daughter but we really have tried to view it as 'just life now' and be positive. Introducing new foods freaks me out to say it simply as it seems to uncover more allergies each time. Yet I really thought I was dealing very well lately with everything and was in control etc..

BUT......As our little guy gets older the reality of his allergies is just starting to hit us now. Our daughter ordered fries in the food court and our son lost it to say the least (we are talking about a 1 1/2 year old who saw fries but couldn't eat them!!). It was the first time he really wanted something and he knew what was being eaten but couldn't them eat himself.

I see parents whip out snacks , sit eating with their kids etc. it is all so casual without a second thought. A park opening by our home lately would have been wonderful but was almost 100% supported by local food stores all of whom had free samples. The entire event was encompased by food!!
Then there are the BBQ invites etc. where it is harder and harder at our son's age to take him. Before I could hold him and he was non the wiser. Now he freaks and sees food and wants it.

I keep telling my husband that this is just the way life is and our son won't know any differently.... but will he. Does it get easier when your child is old enough to understand they can't participate in the same way or more difficult.
So I sound like a dork but really am just starting to feel the reality of it all. I think of all the foods we shared with out daughter. Being bi-racial our daughter has eaten pretty much every type of ethnic food out there. That is almost all we used to eat and it was a huge part of our family.
Now, I feel , I feel very sad.

_________________
DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish


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PostPosted: Fri Jul 03, 2009 12:55 am 
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Joined: Tue Jun 26, 2007 2:45 pm
Posts: 804
Location: Vancouver, BC
I don't have too much in terms of advice, but just wanted to say that I feel for you, and you're not alone. Although my kids aren't allergic to as many foods as your son is, it was really really hard at the beginning when my daughter first got diagnosed with an anaphylactic allergy to peanuts at age 2.5. Before that, we'd known she was mildly allergic to dairy and eggs, but we'd assumed she would outgrow them and be able to lead a 'normal life'. Once the peanut allergy was diagnosed, the thought of 'normal life' came crashing down in a big way.

At the time, my husband was also very relaxed about it, and thought he could tell by looking whether a food had peanuts in it, including traces! My mother in law, who arrived in town the day of the serious reaction, told me I was just overreacting, and that it wasn't a big deal. I honestly felt so overwhelmed, helpless and alone, and wound up in tears several times those first couple of months. Being completely sleep deprived and worn out dealign with DS's eczema didn't help either.

I was grieving the fact that she would never have a carefree life - she would have to ask a million questions any time she wanted to eat in a restaurant, eat at a friend's house, eat anything, basically, and like you said, so much of what's fun and social in our society (as with most others, I think) revolves around food. There would also be so many times that in addition to asking a million questions, she would find the answers to be not the right ones and not be able to partake. Forget about chasing after the ice cream truck. Forget about eating wedding cake. Forget about ordering a 'chef inspired mystery meal' at an upscale restaurant.

To top it off, she's a very sensitive child and her feelings are very easily hurt. It will be hard for her to grow up constantly feeling left out of things because of food. I don't know how we'll manage through her pre teen and teenage years, but are grateful for now because she is very cautious.

We'd thought that since we'd had our turn of 'bad luck' with the allergies and eczema, for sure our son would be fine. Turns out that his eczema was far worse than hers and still is, and he's allergic to more foods than she is. While it was easier accepting it the 2nd time around, and easier to get into 'allergy mode' because we were already living it, it's different having to live through it with each child. He is not at all cautious, and doesn't listen (although only less than 3, so we're hoping that will change), but I worry about him in school settings in the future eating fyummy looking ood that's offered to him by other children because he'll forget that he's not supposed to eat anyone else's food. We'll cross that bridge when we come to it, I suppose, and in the meantime hope that he develops some impulse control and self restraint.

I'm not sure what to suggest. . . . are there any foods or treats your son does like that you can bring with you to BBQs and dinners so you can whip them out to offer him when he sees something that he can't eat?

At home, and even when we're out, we try to not eat anything yummy looking that they can't also have. So we end up ordering and baking a lot of treats so that we can all have the same thing. There are the odd 'may contains' that we have in the house for the adults, but we try not to partake until they're in bed. Although this is something they'l have to live with, and some people choose to get their children used to the idea, while others want their home to be a safe haven for their children. I'm sure there are pros and cons to each method. I know it is easier for us as my children are only allergic to 5 foods total, and your son is allergic to many more than that.

Anyway, just wanted to say hang in there, and hugs to you!

_________________
DD 2004 Allergy to peanuts, egg, sesame, and new: lentils and chick peas
DS 2006 Allergy to peanuts, tree nuts, milk, egg, kiwi fruit, eczema


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 Post subject:
PostPosted: Fri Jul 03, 2009 7:05 am 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6475
Location: Ottawa
BC2007 That is a long list of allergens! :(
Even though he is just a little guy, talk to him about food allergies. There are good books for small children at the library. Alexander the Elaphant series.

I used to talk to my daughter about how strong her body is about fighting germs and things that it concidered dangerous. Then one day it got mixed up and thought milk was dangerous and developed super strong reactions. (think circus muscle man)

At that age I would describe a reaction the same way you describe touching a hot stove. Maybe use pretend food to talk about allergies, restaurants, cross contamination... (Do you have a tomato in that pot? Do you think the tomato juice got onto the carrot?-yikes! No food from the pot until it gets washed)

Do bring special ---food for him. Put it in a fun container. Play it up, "Look what mommy brought for you!"

At his age, he's still used to his sister being able to play with toys that he can't because they aren't safe for under 3 etc. Maybe you can tell him that that is for her and this is for him.

I think it's OK to start pointing out how everyone is different and has special needs. The person in the wheelchair, the boy with braces, I wear glasses,...we once saw an older man with two artificial legs (those fancy curved metal ones) wearing shorts! He embraced his specialness. No one gets through life without something befalling them. Difficult as it is; isn't your son lucky that he can avoid what makes him sick? (some days it's just plan difficult)

_________________
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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 Post subject:
PostPosted: Fri Jul 03, 2009 9:24 am 
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Joined: Fri Oct 10, 2008 9:40 pm
Posts: 2034
Location: ottawa
Alison's Mom, you picked the perfect word...grieving! I think that process must apply here. Denial / Isolation, anger, etc. (does it sound like I'm a bad mom to say from time to time resentment sneaks in ?) It is like the loss of one life and having to accept a new life. To others it may be no big deal, it's 'just' food I have heard many times.

Quote:
I think it's OK to start pointing out how everyone is different and has special needs. The person in the wheelchair, the boy with braces, I wear glasses,...we once saw an older man with two artificial legs (those fancy curved metal ones) wearing shorts! He embraced his specialness. No one gets through life without something befalling them. Difficult as it is; isn't your son lucky that he can avoid what makes him sick? (some days it's just plan difficult)


What a great way to put it Susan. I really do have a lot to be thankful for! I have often felt guilty as other children/adults have bigger health issues / life challenges to cope with. I think to each person and their family there are just as many challenges and adjustments involved no matter the health situation. The challenges just vary from family to family. I know you are exactly right....sulking and self pity just seak up on me from time to time.


Great suggestions regarding explaining and teaching our son about his allergies. I have found endless tips for allergic parenting on all these forums. I have seen the Alexander the Elephant books on the anaphylaxis website but had never heard if they were really any good. Our library isn't able to bring them in (I asked). I think I might go ahead and order them as our son is at a good age to start understanding more.

I think my husband feels more jilted than myself as pretty much 100% of the foods he grew up with are totally off limit. I mean, take fish, sesame, peanuts, tree nuts, egg, veggies out of Asian food and what's left. I read once that fish is easy to avoid as what kid eats fish anyway. Our daughter will eat anything, fish, squid, jellyfish!! Her preference has always been Asian food over 'plain' (as she puts it) food that I grew up with. There is no way I'd take our son into any asian restaurant due to trace, everything is cooked in the same wok, same kitchen........! To make it worse I can't even re-vamp most of these recipes into safe ones as without the main ingredients there are really no other options. We used to eat weekly Chinese, Japanese...mainly sushi, Indian, Vietnamese. Pho soup. So socially and culturally I think my husband really feels the loss of a part himself which he can't pass on to his child.

We did try to cook hot wings once he was in bed one night. He woke up and the poor kid's eyes were red and tearing, he was coughing and sneezing. The aroma from the hot sauce (peppers!) were so airborne that my poor baby was reacting as if we'd shot him in the face with pepper spray.

Alison's Mom - Our daughter sounds much like your daughter in personality , very sensitive and empathetic...but she has no allergies. Our little guy mirrors yours, he already is a dare devil, he has no fear, where our daughter would be more cautious and listen to me our son is 'crazy' as our daughter puts it. :D This makes me very nervous also as I foresee him not being cautious and taking more chances when I'm not about.

I won't blab blab blab any longer....but I do want to say THANKS!!

_________________
DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish


Last edited by BC2007 on Fri Jul 03, 2009 12:27 pm, edited 1 time in total.

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 Post subject:
PostPosted: Fri Jul 03, 2009 9:50 am 
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Joined: Fri Jun 05, 2009 4:22 pm
Posts: 79
Location: Houston, TX
I'm so sorry that your boy is having a hard time! My most allergic one seems to do pretty well at this point with what she can eat and can't eat.

I remember when it occurred to me that dd was most likely going to have a lifelong serious peanut allergy and that I was going to have to protect her life at each gathering, each restaurant, etc. I was devastated! I was seriously like bawling. It is a real change of lifestyle and you have every right to grieve the one you had and the one you thought you were going to have! Especially with a toddler! It's hard enough keeping them from eating DIRT much less the Reese's Pieces everyone's trying to push on them!!!

So, my dd just turned 4 about a week ago, and she is very conscious and very aware of her allergies. She very rarely has tantrums for things that she can't have anymore. A great deal of this is because of her personality, but I do think that one thing that I have done well is be very matter-of-fact about her allergies. Many of my family members come over to visit and they say (in front of her), "Ohhhh can she eat xyz??? Ohhhh noooo that's too bad? What about abc???? Ohhhh nooooo - is there anything that she CAN eat?" It's really annoying!!!! lol They'll even say crap like, "How miserable must that be!!!" I always tell them that a positive attitude seems to help her not feel like she is missing out. Sometimes, if we are at a gathering and her bro and sis get something that she really wants I will promise her a treat when we get home....There is a big difference between a 4 year old's patience and a 21 month olds patience though. I am just so grateful that my 2 year old just has one allergy because he doesn't listen to ANYBODY!!! But I am really glad that I always said point blank, "No you can't eat that because your allergic to it." And I try not to let anyone in her presence bemoan the fact that she can't experience the joys and wonders of whatever they are trying to feed her, lol.

Good luck with your munchkin! I know it's hard to adjust, but soon all of these things will become second nature and you will be comfortable. :) And they are only toddlers for a little while, so this stage won't last forever!

_________________
Daughter, 10 - NKA

Daughter, 3 - peanut, tree nuts, crustacean, dust mites, cottonseed oil, sunflower oil, mangoes, mustard, and very mild outdoor allergies, eczema, asthma

Son, 2 - asthma, mild eczema, peanut, mild soy, mild egg


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 Post subject:
PostPosted: Fri Jul 03, 2009 2:36 pm 
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Joined: Wed Mar 28, 2007 9:22 pm
Posts: 173
I talk with my allergic son about all the things that are different about everyone around us. People have different eye colors and heights, his sister's friend has spina bifida and needs braces on her legs. His Grandpa has muscular dystrophy and uses a wheelchair. I point out all these differences and then I talk about the things that make him different. It isn't always easy, but I try to make sure that we always have a safe alternative snack/food item for him.
There have been many times when I've been in the grocery store looking for safe foods and I'll just break down and start crying. It doesn't happen nearly as often as it used to, but it still does happen every once in a while.
My son is allergic to eggs, potatoes, fish, shell fish, peanuts, tree nuts, pineapple, oranges, lemons, tomato, and soy.
My husband also has quite a list of allergies.
When my husband was growing up he didn't know any other kids who had allergies like he has. He was the only one.
Nowadays, there are so many kids who have allergies. There are a few other kids that attend the same school as my son who also have allergies.
It does get easier as time passes and my son gets older. He understands more and more about his allergies. He knows that you can find.. or make... alternatives to the foods that other people are having. Making those alternatives isn't always easy, but it sure is rewarding in the end when you can offer your child that treat that is similar to what the others are eating.
I have learned that I can use olive oil in my baking instead of margarine (contains soy) or butter (my husband is allergic to dairy).
I have learned that arrowroot starch/flour makes a pretty good gravy (hubby is allergic to wheat and is avoiding corn).
I have learned to be more aware of what we are putting into our bodies because I have no choice but to read all the labels and if I don't know what the food is (name is too long and confusing) I just look it up what I get home.
This site really helps... it helps to know that we aren't alone in this. I helps to know that others know exactly how we are feeling and how frustrating dealing with allergies is.

_________________
Married mom of 4 living children and a baby girl in Heaven.
Between myself, my husband, and our children we have way too many allergies to list.


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 Post subject:
PostPosted: Fri Jul 03, 2009 4:28 pm 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6475
Location: Ottawa
ashley5473 wrote:
Many of my family members come over to visit and they say (in front of her), "Ohhhh can she eat xyz??? Ohhhh noooo that's too bad? What about abc???? Ohhhh nooooo - is there anything that she CAN eat?" It's really annoying!!!! lol They'll even say crap like, "How miserable must that be!!!"


Don't you just feel like saying, "Yeah, you're right. He/she does eat any food-thanks for your concern." :roll:

Sometimes we have to grin and bear it but sometimes we need to tell people that their comments are not helpful.

_________________
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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 Post subject:
PostPosted: Fri Jul 03, 2009 4:31 pm 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6475
Location: Ottawa
[quote="kmommy"]There have been many times when I've been in the grocery store looking for safe foods and I'll just break down and start crying. It doesn't happen nearly as often as it used to, but it still does happen every once in a while. quote]

It usually happens to me during Easter, Halloween or Christmas when all of the cute candies that our children will never be able to have is out on the store shelves. Or when I'm at an event put on by the local cupport group to bring the kids together. Thinking about all of the energy that is put into trying to do something to make life a little easier for them... :? that gets me going every time!

_________________
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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 Post subject:
PostPosted: Fri Jul 03, 2009 5:42 pm 
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Joined: Tue Jul 01, 2008 7:26 pm
Posts: 28
Location: Vancouver, BC
((big hugs))

We're right behind you, with an 18 month old with a long allergy list. She really doesn't eat anything substantial that isn't prepared by me. She's now starting to notice that she's not eating the same food as the rest of us. I'm struggling with finding easy but filling foods to take with us on the go (the equivalent of a jam sandwich and a cheese stick and crackers that I always pack for my preschooler). I'm also working finding some treats on-the-go too.

On Canada Day, we went to the zoo yesterday and stopped at McDonald's for lunch. DD was not happy about her applesauce and potato puffs and was about to lose it. I finally poured some of my Coke into her sippy cup (diluted with water) and that kept her happy. :roll:

_________________
6 year old son - eczema and sensitive skin
4 year old daughter - allergic to nuts, peanuts, sesame seeds, mustard and eggs; has outgrown allergies to wheat and legumes (by age 2) and to dairy, soy (by age 3.5).


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 Post subject:
PostPosted: Fri Jul 03, 2009 8:09 pm 
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Joined: Fri Oct 10, 2008 9:40 pm
Posts: 2034
Location: ottawa
Urmila, thanks for the hug....back at you. I looked at all the snacks I have for our son (not that there are many!) but all have soy or wheat or both. Have you posted under the soy/wheat allergy forums on this site. I'm sure other parents/people who are avoiding the same allergens might be able to give you some great suggestions. I wish I could help out with some food ideas. I totally empathize with the toddler stage/allergies. There is no reasoning or compromising, they see it, they want it.....cuing ... the tantrum :D :D :D

Ah, it was worth posting my break down as it always makes me feel so much better to receive and to be able to give instant and genuine support.

_________________
DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish


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 Post subject:
PostPosted: Thu Jul 09, 2009 2:08 am 
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Joined: Tue Jun 26, 2007 2:45 pm
Posts: 804
Location: Vancouver, BC
BC2007 wrote:
Alison's Mom, you picked the perfect word...grieving! I think that process must apply here. Denial / Isolation, anger, etc. (does it sound like I'm a bad mom to say from time to time resentment sneaks in ?) It is like the loss of one life and having to accept a new life. To others it may be no big deal, it's 'just' food I have heard many times.
I actually was told about the grieving process shortly after our diagnosis (when I *was* grieving) by another mom who deals with her children's allergies, and it all made sense.

Like another poster mentioned, it's important to keep a positive attitude and definitely feel grateful that our children have a condition that can be managed, as opposed to some horrible terminal illness. However, I think we also have to remember that life IS hard, and it's OK to rant about how hard it is (hopefully not to the child, but to another adult who understands!). It does help to talk about our feelings, about how difficult it is sometimes and also about our children's feelings. I talk to my daughter about how she sometimes feels left out, or disappointed that she comes across certain things she can't eat. For children, talking about feelings can help too. It can start with empathy over their feelings, then once they have let it out, you can talk about what they can do next time, or about positive aspects of the experience, etc. I know with a toddler this stuff would just over their heads, but I know it works with my 4yr old - not just about allergy stuff, but frustration and disappointment over aspects of life in general.

_________________
DD 2004 Allergy to peanuts, egg, sesame, and new: lentils and chick peas
DS 2006 Allergy to peanuts, tree nuts, milk, egg, kiwi fruit, eczema


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 Post subject:
PostPosted: Thu Jul 09, 2009 7:18 am 
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Joined: Mon Apr 11, 2005 9:38 pm
Posts: 927
Location: Oakville, Ontario
BC2007, I really feel for you too. I can honestly say that it took me about 2 years to adjust and grieve. On top of that, we had our sons multiple allergic reactions and multiple trips to the ER and lots of frightening events to live through. So many times we were faced with a new allergen, and it was extremely frightening and overwhelming. I really understand what you're going through. Our family stopped eating in restaurants and did not travel anywhere for 3 years (2 of our sons most serious reactions had happened while on holidays - ambulance and ER visits for both of those).

My husband is also Asian - Japanese Canadian. I am Ukranian/English. My daughter was born in Russia and my son was born in South Korea. A real variety of foods was a big part of our lives, and so many of these food can no longer be a part of our lives.

We had to stop having foods in front of our son if he could not eat them. He had a big meltdown when he was 3.5 yrs old and we had gone away with 2 families to Great Wolf Lodge. The other families wanted all of us to eat dinner together (originally I had arranged that our family would eat in our room, and the other 2 families would go out for dinner). The other families decided to order in pizza from Pizza Hut (located on site at Great Wolf Lodge). Of course, our son could not eat that pizza, but we mistakenly thought he would be okay because there was lots of other yummy food around that our family could eat. Well, talk about a meltdown! It was very very upsetting to see his reaction to the situation. We have to always be aware of this and plan around it.

We do not have any foods in our house that contain our sons allergens; however, now that our son is older, we are able to participate in events that involve foods that he cannot eat. For example, we attend Korean cultural events, for our sons benefit - since he was born there, and he cannot eat the food. We bring similar looking food that he loves, and he is okay with this. We are able to talk to him about these things, and we have definitely adjusted our attitude and approach to food and its importance at these events. We have made the events about the people, not the food. We will eat on the way to an event so we are not hungry when necessary.

Over time, I have found recipes that allow us to have some of the ethnic foods we love. For example, I make a modified version of Thai Chicken which is marinated in soy sauce, sugar, garlic and a hot sauce. I make a dipping sauce that goes along with this. If you want the recipe, please let me know. We also make vegetarian sushi. I know your son cannot eat raw fruits and veggies, but maybe there are other options that will work for you. We make teriyaki chicken or steak with soy sauce, sugar and garlic. We make a modified version of Japanese/Canadian chow mein. Basically, I take a recipe that we used to love, and try to make it work for our family.

All this to say, it takes time to adjust to this new way of life. And not just a few weeks either. The emotions you are going through are normal and to be expected.

Take care of yourself!

_________________
15 yr old daughter: no health issues
12 yr old son: allergic to peanuts, tree nuts, eggs, fish, sesame, sunflower, mustard, poppy seeds, green peas, some fruits, instructed to avoid all other legumes (except soy & green beans), pollen, cats, horses


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PostPosted: Wed Jul 15, 2009 12:32 pm 
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Joined: Fri Oct 10, 2008 9:40 pm
Posts: 2034
Location: ottawa
I am so excited. Yesterday Christmas came early in our house. We received our son's RAST tests back for a few of his allergies yesterday. Although I was prepared for most to be high his egg allergy shows as a '0' (.35)! :lol:
Our allergist let us know that at our next visit he will do a skin prick, if that is also negative we have the ok to go ahead with an oral challenge for egg. Do I need to say I bawled like a baby :D . Even to eliminate one allergy would be so huge. I have my fingers, toes ,arms, legs and eyes crossed for good luck.

_________________
DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish


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PostPosted: Wed Jul 15, 2009 4:43 pm 
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Joined: Thu Feb 26, 2009 12:05 am
Posts: 649
Location: AB, Canada
It's difficult. We're still adjusting. I hate when people say, 'you're actually lucky, your family will be so much healthier etc..'. We go to a nice park near where we live, and there's a concession. Seeing families indulge in ice cream cones makes me sad for my kids. Not that we're junk food junkies, but once or twice in the summer would be nice.

I feel sad when I go to a restaurant with a friend or DH and see families will little kids eating out. I don't know if this is something we'll be doing much of.

Good luck to you, and I hope it helps to know that others feel the same way. hugs.

_________________
DSs 7,7,9 all PA


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PostPosted: Fri Jul 17, 2009 4:43 pm 
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Joined: Mon Apr 11, 2005 9:38 pm
Posts: 927
Location: Oakville, Ontario
BC2007, WOW, egg??!! That would be absolutely fantastic if your family could have egg! Good luck with it! Of all the allergens our son has to deal with, egg would be our first choice for the allergen he outgrows. Let us know the outcome.

_________________
15 yr old daughter: no health issues
12 yr old son: allergic to peanuts, tree nuts, eggs, fish, sesame, sunflower, mustard, poppy seeds, green peas, some fruits, instructed to avoid all other legumes (except soy & green beans), pollen, cats, horses


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