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PostPosted: Fri Jun 03, 2011 2:27 pm 
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Joined: Fri Oct 10, 2008 9:40 pm
Posts: 2034
Location: ottawa
You have some very good points Sarah, I do appreciate your perspective. :thumbsup
I agree that many times the word 'allergy' is loosely used by even dr's. And such as in your case it only leads to even more confusion over the diagnosis.
I agree that education is the key....I will add though that I find I am constantly trying to (kindly and without sounding condesending) correct people when they say they have an allergy when it clearly an intolerance or sensitivity. Yet these same people over and over will still refer to certain symptoms as allergic reactions. I think most people are so programmed to call any type of reaction an allergy. It is really a word which most use out of habit.
I think when we as ana. allergy parents educate daily 24/7 in all we do and say it is just very frustrating to have this confusion. The school scenario I am dealing with right now and it is SOOOOOO frustrating. I have enough on my plate with the upcoming school year that adding this exact issue is very annoying...the parent doesn't want to hear any words of clarification lets put it that way. This issue does put my son at risk in my eyes. When you said every child should be treated/fed in the manner set by the parents I 100% agree....unfortunately this confusion just isn't helping right now put my mind at ease.

Keep sharing Sarah, new ideas, perspectives are always welcome and good for thought.

_________________
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: Sun Jul 03, 2011 11:25 am 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6456
Location: Ottawa
Between misinformed Dr's, questionable methods of diagnosis, parents who hope a condition will get more attention if they call it "allergy" additional risk factors and different levels of comfort within the allergy community...the bottom line is, each child has a unique medical make up and should be given an individual anaphylaxis plan. No one but the child's parents/legal guardian have the right to make decisions regarding the child. This should be made crystal clear to the school!

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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: Sun Jul 03, 2011 2:11 pm 
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Joined: Sun Nov 30, 2008 11:00 am
Posts: 1119
_Susan_ wrote:
different levels of comfort within the allergy community...the bottom line is, each child has a unique medical make up and should be given an individual anaphylaxis plan. No one but the child's parents/legal guardian have the right to make decisions regarding the child. This should be made crystal clear to the school!


The comfort level for us has also increased as we have gained more knowledge and as our child has taken more control of her allergies.

No surprise to anyone that there is a wide range of maturity levels, curiousity levels etc. between kids. What works for one child may not work for another child - that holds for reinforcement, discipline, education and also personal health management. One child may be comfortable dealing with their allergies at a much different age/grade than another child. It also depends on their teacher, classmates and friends.

_________________
me: allergic to crustaceans plus environmental
teenager: allergic to hazelnuts, some other foods and environmental


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PostPosted: Fri Jun 15, 2012 2:15 am 
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Joined: Tue Jun 05, 2012 2:44 am
Posts: 6
Hello All,

I am new to the forums and found this topic very interesting. My most recent visit to a food allergy dr suggested that he believed I suffer from oral allergy syndrome. He came to this conclusion based on my test results taken during a time that I take two zyrtec a day the dr was aware that I was actively taking that dose and had not had a pause for the allergy tests. He took blood tests. He did not take into account my symptoms existing test results that show that I have allergies to most of the items I've listed to my medical history. I have Asthma, excema, environmental and serious food allergies. I have tested positive to everything from birch,various other trees, grasses, molds, dust mites, dogs, cats and foods all at a high level. I have suffered from food allergies since I was a child. I have suffered an anaphylactic response that required emergency treatment on two separate occasions.

Most recently last night while df gave fresh green beans to our Yorkie I began to find myself having asthma like symptoms and my lips where going numb and my throat began to tighten. I hadn't even touched the green bean I was just in the same room. I had to take my zyrtec and 4 doses of benadryl 10 puff of ventolin and the symptoms did not subside. I spent the night crying trying to decide if I should go to the er. I didn't go since my dr says its just a sensitivity it won't kill me. I think my allergies are not taken seriously enough since I am sitting home gasping for air and feeling like I shouldn't go to the hospital since dr says its just oral allergy syndrome. My asthma dr wants to start me on Zolair (I do meet the medical required allergy load and am approved by my insurance), after reading the product warning I'm terrified(family history of cancer and heart disease). Currently I cannot and emphasize cannot eat avocados, kiwis, pineapple, bananas (I am latex allergic) I cannot eat peanuts, legumes, lentils, soy,tree nuts, melons, cucumbers, carrots, squash, peaches, plums, nectarines, dates, strawberries, blueberries, tomatoes, potatoes, eggplant, persimmons and various other fruits and veggies. Recently I had a reaction eating shrimp that left me feeling the usual symptoms.

I am not sensitive to these foods I am allergic ingesting them causes gastrointestinal discomfort to the extent that I it causes bleeding. Not only do I turn red but I blow up I get hives, I feel like I cannot breath I get nervous, sweaty, shaky, lightheaded and this is not from eating actual portions something I would never dream of this is from accidental small quantities consumed unknowingly. Again dr says I have oral allergy syndrome. I say not, he is a leading specialist in his field. But he's not here when just being in a room with a raw string bean is causing me to not be able to breath without needing allergy meds and ventolin.

I fear eating. I loath eating. I have gained a ton of weight and its because I eat bland starchy items that don't bother me like rice. My allergies are so intense that when pollen counts are super high I have to stay indoors or my asthma flairs to the point that I need to be placed on prednisone. I have been placed on prednisone for long period of time 4x in two years. Yet my Dr. says its just a sensitivity.

I've requested to do a food challenge in the hospital so he could see my reaction and he said its way to expensive to do with the list you have. I suggested to just try it with one item so he could see whats happening when I eat these foods its got shot down and I was sent to go back to see my asthma dr. When you get to the point that your not getting support what are you supposed to do. I don't eat in restaurants, or go to dinner parties, I limit where I go on vacation. Its not a sensitivity its an allergy.

I would give anything to be allergic to one item to have a restriction that limits me to not eat one item. I feel like its everything. Its everything I grew up eating and that I loved. I can still taste what these foods taste like even though I haven't touched many of them for years.

I'm sorry if this sounds like a rant but I guess I just so need to vent I'm so frustrated with my allergies tonight my throat still hurts and is tight from last nights green bean incident.

I think sometimes allergies are under diagnosed and that may be why someone like me will say I'm allergic to xyz because if I ate them I'd be in the er. Even though my dr thinks its just a sensativity.


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PostPosted: Sat Jun 16, 2012 8:25 am 
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Joined: Wed Mar 23, 2005 9:47 am
Posts: 305
Location: Montreal, Canada
Quote:
I fear eating. I loath eating


When I say that, I always get a "your're crazy" look. Rare to see someone who thinks like me.

My advice, un less you live in Quebec, which the waiting at the ER could kill you anyways, I would have gone to the ER. Don't wait in fear or pain. If your doctor don't believe you, change doctors. Get a second opinion. Be proactive. Don't wait with fear of not knowing. It's bad enough that you are probably afraid anytime you put something in your mouth.

On a side note, I'm surprised you doctor lets you take 10 puffs of Ventolin. I have asthma and my maximal dose is 4 a day. With 10, my heart would have palpitation and I would probably give myself a heart attack.


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PostPosted: Sun Jun 17, 2012 11:19 am 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6456
Location: Ottawa
I second youngvader's suggestions! Your Dr sounds very old school.

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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: Sun Jun 17, 2012 5:24 pm 
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Joined: Mon Apr 11, 2005 9:38 pm
Posts: 924
Location: Oakville, Ontario
Evi, I'm so sorry to hear of what you're going through. I really think you need a new allergist... we changed allergists with our son when he was not even yet 2 years old because I was not satisfied. We now see one of the best allergists in the country (in my opinion :) )... Dr Susan Waserman at McMaster University (she's one of the "Ask the Allergist" consultants in Allergic Living). She has been amazing, and so has her team at the hospital. In order to make a change, I firstly determined the allergist I wanted our son to see in our area. We then had to go to our family doctor to ask for a change in the referral. I love our family doctor, but she still needed to document the reason for the request for a change. We then had a referral to see Dr. Waserman, which took about 6 months (I wasn't worried, because our son already had a prescribed Epipen). When we saw Dr. Waserman, and her team, I knew we were in the right place. It is so important to receive proper care!!! Do you have a prescribed Epipen? You absolutely need one, and if you don't have one, buy one over-the-counter. The Epipen(s) will give you peace of mind that you have one should you require it. Our son has received the Epipen 3 times, and seeing his near instantaneous relief from his symptoms shows how well it works. He had barely a mark from the injection site. He is now 10 years old and the last Epipen required was when he was 8. We've had many trips to the ER, ambulance and Epipen, but nothing in the last couple of years. Having a good allergist is so important as part of your self-care plan. In our home, it is our one completely safe place... we don't have any food he is allergic to because we really needed our home to be comfortable and safe for all of us. :huggy to you and please feel free to talk to all of us here. We're listening.

_________________
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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