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PostPosted: Thu Sep 14, 2006 10:29 pm 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
First, sorry that the list has grown longer rather than shorter. I know it must be a bit of a blow (to put it mildly).

Second, yes, almonds and hazelnuts are tree nuts.

I guess my first piece of advice would be to take it one day at a time. Do you need specific food-oriented advice? How old is your son?

Hang in there...

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: Thu Sep 14, 2006 10:47 pm 
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Joined: Sat Dec 31, 2005 9:00 pm
Posts: 70
Location: Victoria, BC
Thanks KarenOASG!

But, I guess I should be thankful because you have one child who is anaphylaxis and one who is allergic to a lot of things too!

My son is five and a half and just started kindergarten. He is also asthmatic due to allergies and colds. He is also allergic to cats, trees, grass and mold. My daughter so far is only allergic to cats, trees, grass and kiwi fruit.

We should know more after we meet with the second allergist and the nutritionist. Right now total avoidance of all the allergens is suggested. It was suggested by a naturopath that anything he is sensitive to but not allergic to, we should also avoid because with the list of food allergies growing, it's because his immune system is not functioning normally and anything that he is sensitive to that we keep giving him, he will eventually become allergic to.

I do most of the baking for him but almost every ingredient I buy to put into the baked goods, if it is not made in a facility that is 100% peanut free, it is manufactured in a facility that contains soy. If it is not made in a facility that is nut free, it is produced on the same equipment as soy products, etc...It just blows me away. What has kept me sane is finding the brand: Enjoy Life. I still need to find peanut/soy/tree nut free flax seed and pumpkin seeds. Although I could make my own pumpkin seeds, but then I would have to dehull all the pumpkin seeds I would need to put into a batch of cookies...

I've provided/donated the Enjoy Life snack bars to our school to put into our earthquake packs for the kids who have severe lifethreatening food allergies. That way, I know my kids are safe in an emergency. No sense in adding an emergency while they are in an earthquake.

Sorry, totally off topic, but this has been, the last three weeks, month, just a nightmare. Seeing all the foods he was eating the day before suddenly having to tell him that the quaker chewy peanut free granola bar he had yesterday, he can't have anymore because it is not soy free, etc. His world has been turned upside down, I know it has.

Anyways, thank you for your kind words. I will update you all after we speak to our allergist and nutritionist.

Nancy

_________________
Son-anaphylaxis to peanuts, allergic to soy, peas, beans, tree nuts, cats, trees, grass & mold. Asthmatic due to colds & allergies.

Daughter-anaphylactic to kiwi fruit, allergic to soy, dairy, trees, grass, cats & dust


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 Post subject:
PostPosted: Thu Sep 14, 2006 10:51 pm 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
Yeah, the soy is a killer. We had to avoid it for a few years with my oldest, and then we had to cut it out briefly for my youngest when he was about 3 -- and this was just after we'd introduced Tofutti soy sour cream and soy cream cheese and Tofutti Cuties, all of which he loved. It was awful!

Luckily a follow-up appointment with another allergist cleared him of the soy allergy (I'm not sure he ever was allergic to it) and he's been okay with it ever since. But it's brutal to have to avoid 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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 Post subject:
PostPosted: Fri Oct 13, 2006 10:50 am 
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Joined: Wed Aug 10, 2005 11:21 am
Posts: 687
Location: Cobourg, ON
I am feeling quite down. My daughter received her recent RAST results and her levels have almost doubled in all 3 tests. Her milk was 12 last year and now it is 28. Her peanut was 10 and now it is 18 and her egg had been .55 and now it is 1.83. I had hoped that we would see a decline in milk and egg. We still hold hope that she might outgrow these allergies. The allergists were so hopeful when she was 1, 2, and 3. Now I worry that these will be lifelong.

I asked the nurse from Sick Kids, who reported the results, if seasonal allergies might affect the IgE levels. These recent results were from a test in Sept in the middle of ragweed season. Last year's test was done in July. She said the doctors at Sick Kids were just discussing this recently but there is no clear link or evidence. I think I might request a test done in late winter or early spring prior to pollen season just for comparison. Losing milk would certainly make her life so much easier. I am glad that we have not told her that outgrowing allergies is an option. It would be too hard to pass along this news to her.

I certainly hope a cure or vacine might come someday.

_________________
13 year old daughter -- lives with life-threatening allergies to milk, tree nuts and peanuts; seasonal allergies (birch, maple, ragweed); pet allergies; asthma; and eczema
10 year old son - no allergies


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 Post subject:
PostPosted: Sat Oct 14, 2006 12:24 am 
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Joined: Mon Feb 27, 2006 12:37 pm
Posts: 96
Scores mean different things for different people. You first need to know what your base IGE score is, and than they base the IGE reactions to specific antigens off of that. You can't go by what someone else's sheet says. For one person a .50 might be a class 2, but for another person it could be a class 1. It's all relative.

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2 year old son: allergic to milk--waiting to introduce other allergens

self: allergic to milk, eggs, soy and other legumes, corn, oats, wheat, turkey, tree nuts, yeast, fish


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 Post subject:
PostPosted: Sat Oct 14, 2006 7:45 pm 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
I'm sorry that you're feeling down. It is hard to get those kind of results. I think that's a very interesting idea to have another set of tests outside of pollen season. Definitely keep us posted on whether you do this or not.

It's funny that you mention outgrowing allergies. My DH and I are polar opposites on how we think about this. He feels that my kids will outgrow their allergies one day, while I'm the opposite - I really feel that it will likely be for life. But there are still times when I hope and pray that my youngest will at least outgrow dairy. I really do think it's one of the more difficult allergens to cope with when it's potentially anaphylactic.

Anyway, I'm sending a big cyber hug to you!!

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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 Post subject:
PostPosted: Sun Oct 15, 2006 11:05 am 
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Joined: Wed Aug 10, 2005 11:21 am
Posts: 687
Location: Cobourg, ON
Thanks Karen. I'm feeling better. The results took me by surprise. We didn't expect a rise in her levels. As a toddler she had so many skin reactions and now not so many at all. We were hoping that this was an indication that maybe things were improving. Anyways, we will maintain status quo. I agree that milk is a very difficult allergen to deal with especially with young children. It is a real concern in the school environment. Now, we are going to focus on her environmental allergies and see about allergy shots or other meds to provide some relief for her.

Shai, I do not know what a base IgE score is. Could you explain this term? I know that the RAST test is still very new and that makes the information difficult to interpret. Could a base score be higher during seasonal allergy season vs. winter time?

_________________
13 year old daughter -- lives with life-threatening allergies to milk, tree nuts and peanuts; seasonal allergies (birch, maple, ragweed); pet allergies; asthma; and eczema
10 year old son - no allergies


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 Post subject:
PostPosted: Mon Oct 16, 2006 10:24 am 
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Joined: Mon Feb 27, 2006 12:37 pm
Posts: 96
katec, they will usually do a test on the drawm that is a "control group" for the test. That helps them determine where your scores are. It's hard to explain. On my tests it says this:

negative <.05
0/1 .05-.08
1 .08-.15
2 .15-.50
3 .50-2.50
4 2.50-12.50
5 12.50-62.50
6 >62.50


control=.15
total IgE=568 (normal for an adult is under 100)

My doctor says that anything in class 1 is considered an allergy, but you can eat it from time to time....just not often. Anything class 2 and above should be avoided.

_________________
2 year old son: allergic to milk--waiting to introduce other allergens

self: allergic to milk, eggs, soy and other legumes, corn, oats, wheat, turkey, tree nuts, yeast, fish


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 Post subject:
PostPosted: Sat Oct 21, 2006 8:03 pm 
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Joined: Thu Sep 22, 2005 11:39 pm
Posts: 1141
Location: saskatchewan, canada
Yesterday my allergist wanted to retest my youngest fro milk/eggs. I was pretty sure she was still pretty severe (hives from touching things in public places is pretty common with her). She had skin tests for milk / egg white / egg yolk and all were positive. They all reacted but, the milk one made a HUGE hive. MY doctor said "she must never, ever under any circumstances have anything containing even a trace of milk" I already knew that, but my allergist just confirmed my own fears that she is VERY severly allergic to milk. He had always been reassuring that she might outgrow this, but he now feels she is too allergic to expect her to outgrow this anytime soon. We chose not to do her RAST and put her through any more trauma because her arm was not in very good shape after the tests :cry: .He felt the numbers would be REALLY high, and I might prefer to not get that information anyways. Hours later, even after taking reactine the spot where the milk test was was a hard raised bump.

My oldest is NOT allergic to coconut...yeah. And she had her RAST done...we are awaiting the results. I don't feel too optomistic that the number will be low.

_________________
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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 Post subject:
PostPosted: Sat Oct 21, 2006 8:15 pm 
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Joined: Sat Dec 31, 2005 9:00 pm
Posts: 70
Location: Victoria, BC
We went to another allergist yesterday. An allergist we were referred to. He wanted to do a skin prick test on my son who we know is already anaphylaxis to peanuts, allergic to soybean, peas, and tree nuts. I was a bit apprehensive about this since we knew he was reactive to all of the above through blood tests. He had never had a skin prick test for peanuts because he had reacted when he was 2 1/2 years old when I gave him a tsp. spoonful of peanut butter. He broke out in hives all over his face! But, if we were going to do it, expose him to peanuts, etc, when better and where better to do it is at the doctor's office. So, we had the skin prick test done and surprisingly the hive that developed was not as high as we all thought it was going to be because of his RAST test result being 50.0 - very high! Anyways, he still recommended when our epi pens expired that we get a twin jet for him for school and at home and he wrote a prescription right away. So, what he was trying to say that even though your test results say you are allergic, if there is no reaction when the allergen is ingested, it is okay for someone to continue having that allergen. I still think though that ultimately that allergen will cause a reaction when exposed to enough.

_________________
Son-anaphylaxis to peanuts, allergic to soy, peas, beans, tree nuts, cats, trees, grass & mold. Asthmatic due to colds & allergies.

Daughter-anaphylactic to kiwi fruit, allergic to soy, dairy, trees, grass, cats & dust


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 Post subject:
PostPosted: Sun Oct 22, 2006 2:34 pm 
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Joined: Wed Aug 10, 2005 11:21 am
Posts: 687
Location: Cobourg, ON
Saskmommy, it is hard to receive this news - I know. Your daughter (and mine) are still very young so there is some hope. My cousin's daughter was almost 10 when she finally outgrew her milk allergy. I have heard or read that the size of the "wheel" is not necessarily an indication of the severity of an allergy. For example, last year my daughter's RAST to egg was only .55 but her "wheel" (I am pretty sure that is the name of the reaction in a skin test) was very large. It was larger than milk and peanut. How large was the control test on her arm?

I find allergy tests so frustrating because of the exceptions to rules, false positives and unpredictability. My daughter has never even eaten eggs or peanuts (that we know) yet because of positive skin tests we live in uncertainty. Her RAST tests indicate positive so there is no chance of an oral challenge. There is a possibility that she might not even be allergic! Until there is something better to predict allergies I guess we are stuck waiting.

Our daughter always has her skin tests on her back. It is quite easy doing it this way. She gives me a big hug, I hold her tight and the doctor does the test. Was it hard doing the test on her arm?

Hang in there. A big hug to you. Milk is definitely a hard allergy to live with but you are doing a great job managing it.
Kate

_________________
13 year old daughter -- lives with life-threatening allergies to milk, tree nuts and peanuts; seasonal allergies (birch, maple, ragweed); pet allergies; asthma; and eczema
10 year old son - no allergies


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 Post subject:
PostPosted: Sun Oct 22, 2006 2:58 pm 
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Joined: Sun Mar 05, 2006 1:05 pm
Posts: 528
Location: Burlington, Ontario
Saskmom, sorry to hear about that. But don't despair, she is still young.

BCMom, I have been told that skin tests are not necessarily an indication of the severity of the allergy, or even an indication of allergy. When my daughter got tested, they did coconut and she was +3 but she has coconut, it's not an allergy. The doctor said not to worry. The RAST for coconut was negative as well. Who knows?

BCMom, check with your school before bringing them a twinject. Schools in Ontario (at least in our school board) won't handle the needle part, just the first part, so it's kind of useless to buy one for the school if they won't give it. I guess that also means that they won't give diabetic children their insulin. You could always get 2 epipens instead.

_________________
15 year old - asthmatic, allergic to cats, dogs, horses, waiting to be "officially" diagnosed for anaphylaxis
12 year old - asthmatic, allergic to tree pollen and mold, OAS
Husband - Allergic to amoxycillin
Self - Allergic to housework only


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 Post subject:
PostPosted: Sun Oct 22, 2006 3:16 pm 
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Joined: Thu Sep 22, 2005 11:39 pm
Posts: 1141
Location: saskatchewan, canada
Katec, the control was quite small about 3/4 of a centimetre across, the egg white and yolk were similar. The milk was about 2 cm across within 5 minutes and in a few hours was like a half a golf ball under her skin, even though she had reactine. It was still quite bothersome, and it finally cleared when we put some benadryll cream directly on it. We've always done them on the arm...it's not that bad...the girls actually like to see the nurse circle the wheels in pen, and transfer it to tape and to their file. Sometimes she'll draw a happy face so they think that's cool too.

I think I was always hoping that she would at least be in that 80% that outgrows milk by 3 - 5 years of age. My allergist felt that too until yesterday...now he's saying we're in this for a while...that sucks. My husband was severely allergic to milk until he was 12, but at least he outgrew it (sort of). No more hives, immune system reactions just mystery migraines until milk was cut out of his diet (from us not having it in the house)and the migraines disappeared. I don't even really care if the girls or I ever eat milk again...I would just like it to not be so scary taking her to public places.

_________________
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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 Post subject:
PostPosted: Sun Oct 22, 2006 7:15 pm 
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Joined: Sat Dec 31, 2005 9:00 pm
Posts: 70
Location: Victoria, BC
Thanks Nicole!

I never thought that the school might not accept having a twin jet. I'm told that a twin jet epi pen is the same cost as one epi pen. So, if I got two epi pens, that is double the cost. But I understand about the complexity with the twinjet. The allergist made both my husband and I administer and take apart one in his office to teach us how to use it. It was complicated, especially having to remember to push the second time from the top because it is injecting the adrenaline into the body...

The main thing is the skin prick test and the RAST scores were positive so we are going to treat it that he is allergic enough to avoid soy altogether and tree nuts most of the time. Peanuts we know for sure he is anaphylaxic to since he had a reaction the first time we gave him peanut butter to try...

Bye the way, this time my son also had the skin prick test done to him on his arm. The previous times were on his back. After dinner that night till about 8 p.m. he was coughing for no reason and we predicted it was because of an after effect of the skin prick test that morning. We gave him reactine and in 10 mins., he stopped and fell asleep.

One other thing the allergist suggested was that he is allergic to soybean but many people who are allergic to soybean still can have soy sauce. In the next month or so, I will bring my son back to the allergist and have him tested for soy sauce. Apparently, the allergist can do that in his office so that it is in a controlled setting. It will be interesting to see what the result will be.

_________________
Son-anaphylaxis to peanuts, allergic to soy, peas, beans, tree nuts, cats, trees, grass & mold. Asthmatic due to colds & allergies.

Daughter-anaphylactic to kiwi fruit, allergic to soy, dairy, trees, grass, cats & dust


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 Post subject:
PostPosted: Sun Oct 22, 2006 11:21 pm 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
Hey saskmommyof2 - just wanted to say I'm sorry about the results too. It's hard to get the "hard data" even though you know what the reality is from day-to-day living.

We got that kind of news from our allergist about our youngest about a year ago. She said that she didn't expect him to outgrow milk until at least middle childhood (whatever that is ... I took it to mean 8-9), if ever.

Big hugs....

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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