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PostPosted: Tue Oct 24, 2006 2:55 pm 
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Joined: Sun Mar 05, 2006 1:05 pm
Posts: 528
Location: Burlington, Ontario
Update: We went back to the allergist today, with some fresh corn and some of the theatre popcorn, and, you guessed it, everything came back negative! I don't know whether to be relieved or upset. I was almost hoping it would be positive, just so we'd have a clear answer.

Once again, the dr. is more concerned with her asthma, it's still not fully under control despite heavy doses of Advair. She is now going to try her on Symbicort and Singulair. I wonder if her reactions were related to the asthma somehow...

The dr. wants to do a food challenge in hospital for the peanut and the corn, but not until the summer. So we have to wait til this summer for an answer about those. Meanwhile, something else could be causing her reactions, but we just don't know what, so it's like living in limbo, not knowing if and when another reaction might occur.

It is very frustrating not knowing. And it is frustrating to see that we can't get the asthma under control, despite the fact that it is being treated aggressively. :(

_________________
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: Tue Oct 24, 2006 6:07 pm 
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Joined: Fri Jan 06, 2006 8:22 pm
Posts: 154
Location: Georgia
So sorry! I know your daughter must be scared to death, just waiting for the "other shoe to drop!" :(

Has she had any more episodes, other than the asthma?

Daisy


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 Post subject:
PostPosted: Thu Oct 26, 2006 2:12 pm 
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Joined: Sun Mar 05, 2006 1:05 pm
Posts: 528
Location: Burlington, Ontario
Hi Daisy,

Thank you for your kind words. My daughter hasn't had any other reactions since.

I think we're more frustrated than anxious. It's hard to explain. Doctors don't seem to want to investigate outside of their area of expertise. I wish they would test her for oesinophilic gastroenteris, just to rule it out, as she is having some problems in that area: she often wakes up with stomach pains and nausea, her throat still feels puffy, she throws up occasionnally. She also has frequent nose bleeds, but nobody seems to worry about any of this. Also, the fact that the doctor suggests that it might be a panic attack bothers me, as it's almost saying that it's all in her head. I know teenagers can sometimes be drama queens but she's not an axious child. I know in my heart that it's not a panic attack.

Meanwhile, she has to go on for months assuming she is allergic to peanuts and corn, just because the doctor wants to wait til the summer to do a food challenge. She's still eating things with corn syrup and corn starch, just avoiding anything with corn protein.

The other thing is that all this could be asthma related. Maybe her body just went into overdrive and went into some kind of shock (just my own theory), an acute asthma attack, even though prior to that she wasn't wheezy or feeling like she needed to take her relief inhaler. There is the fact that she is bad at judging her asthma symptoms, because the first time she was tested this year, her lung capacity was at 60% and she said she felt just fine. :shock:

So, she never travels without her inhaler and her epi-pen, so if they are asthma attacks, we know that the epi-pen can help.

_________________
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: Thu Oct 26, 2006 11:09 pm 
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Joined: Fri Jan 06, 2006 8:22 pm
Posts: 154
Location: Georgia
Nicole,

Has your daughter kept a diary of her reactions? Since it seems you may have ruled out a couple of suspicious food items with the popcorn and nuts, have y'all started looking at the bigger picture?

Perhaps a new lipstick she was wearing at the movies? A different shampoo? Did she have a soft drink? What about what her friend (what did she eat for dinner, lipstick, cross-contamination with friend's candy/food/drink at the theatre). I know that sounds a bit odd, but you have to look at everything.

Some of my reactions from a couple of years ago have only recently made sense when I have reviewed my notebook.

It is definitely frustrating. Hope you get the the bottom of it soon.

Daisy


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 Post subject: contact/airborne
PostPosted: Fri Oct 27, 2006 11:56 am 
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Joined: Wed Oct 04, 2006 4:26 pm
Posts: 21
Could she be contact or airborne sensetive?

Maybe a bit of residue was on the chair and she touched it or even somone eating m&ms behind her without her knowing????

thank god "angel women " was there!

Just out of interest, did her friend know what was going on and how to use the epi?

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http://z9.invisionfree.com/Anaphylatic_ ... hp?act=idx


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 Post subject:
PostPosted: Mon Oct 30, 2006 9:53 am 
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Joined: Sun Mar 05, 2006 1:05 pm
Posts: 528
Location: Burlington, Ontario
She didn't have anything to drink at the theatre, just the plain popcorn that her friend and her shared. Yes, perhaps her friend ate something that night and I suspect it's too late to ask, but I will ask anyway.

Everything else was the same, no new lipstick, no new shampoo, etc. We considered all this.

I don't think she's sensitive to airborne food allergens either at this point. I really believe it happens in the GI system for her, as this is how she started to react both times. Of course that could change if she becomes more sensitive.

We won't find out until the food challenge this summer I guess...

_________________
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 Nov 05, 2006 12:54 pm 
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Joined: Tue Mar 22, 2005 6:53 pm
Posts: 1454
Location: Canada
Nicole, I'm sorry to hear that you are still in the dark about all this. I do think that the eosinophilic gastritis theory is worth looking into. Also, whenever I hear of people having GI symptoms from unknown causes I think "celiac disease?"

The two best sources of info. I've found:

http://www.celiacdiseasecenter.columbia.edu/CF-HOME.htm

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm

If your daughter's asthma isn't under control with the meds, I wonder if she could be having upper respiratory problems in addition to asthma. (especially because she feels like her throat is swollen). Have you looked into vocal chord dysfunction at all? (it is often difficult to tell the difference between vcd and asthma---but with vcd one tends to wheeze when breathing in . . . with asthma when breathing out. One can have both.)


Last edited by Helen on Wed Nov 08, 2006 11:27 am, edited 1 time in total.

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 Post subject:
PostPosted: Tue Nov 07, 2006 10:14 am 
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Joined: Mon Jul 03, 2006 8:23 pm
Posts: 190
So sorry to hear about the allergic reaction, Nicole. What comes to mind is the following:

The ingredients in the batch of popcorn (e.g., suppliers) could possibly have changed very slightly and been cross-contaminated at source that day. (Difficult to know this.)

Cross-contamination at the theatre is also a possibility. For example, if one of the servers had been munching on one of your daughter's allergens before serving her, that could do it. I've had several reactions in this type of situation. (e.g., A cafe staff member was eating a nut cookie while serving customers; a video store clerk was eating a peanut chocolate bar while working.) They're not technically allowed to do this, but it sometimes happens anyway.

Have you found out anything new about the mastocytosis workup? Please take the following with a grain of salt, since I'm a layperson, but this is when a person has too many mast cells in the body, and as a result, allergy-like reactions take place. Mast cells 'explode' during allergic reactions, releasing the mediators such as histamine into the body. In an allergy, this is triggered by the immune system and IgE. However, in some people, the mast cells explode without being triggered by the immune system. Instead, they're directly triggered, and they explode anyway. If a person has too many of the mast cells (can be system-wide, simply in the skin, or in specific organs), this indicates mastocytosis. It's fairly rare, but it's good that it's being considered, since a small number of individuals with 'idiopathic anaphylaxis' have a mast cell disorder.

There is also a type of mast-cell disorder known as MCAD (Mast Cell Activation Disorder) or MCAS (Syndrome), where the number of mast cells in the body is normal, but the cells themselves are very reactive, leading to many allergy-like reactions. This is relatively new on the research scene, and is -- in my experience -- not very well known among doctors in Canada. There are some cutting-edge researchers and clinicians in the U.S., however, including Dr. Mariana Castells.

Here is a relevant transcript. I hope this isn't too much information:

http://tmsforacure.org/transcripts/expe ... 2004.shtml


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 Post subject:
PostPosted: Wed Nov 08, 2006 10:30 am 
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Joined: Sun Mar 05, 2006 1:05 pm
Posts: 528
Location: Burlington, Ontario
Helen: I don't think it could be celiac. She eats bread and pasta every day and is normally symptom free. As for the VCD, I would think that the spyrometry test would pick that up (from what I have read, it creates a characteristic pattern on the test chart). We'll see how she does on the Symbicort and Singulair.

Andrea: You're right, the popcorn could have been cross-contaminated with an allergen. Which one however is the question. My daughter has been tested for a number of foods and everything is negative! It's mind-boggling.

As far as store clerks not eating on the job, I don't think it's common knowledge for them. (Especially when you're dealing with a 16 year old whose boss is probably 17 years old!!) :lol:

As for the mastocytosis workup, it's all negative. What frustrates me is that we made a trip to Toronto (which took up a whole day) for nothing, as our first allergist had already checked for tryptase, it was all in the file. The T.O. dr. didn't test her for anything, just asked a bunch of questions and referred us back to our allergist to have her test for fresh corn and popcorn. And now I feel like the allergist has "shelved" the issue and just focuses on the asthma. There will be a food challenge in the summer, but what if she passes it? Will the allergist search further or just ignore it?

I kind of skimmed through the link you provided (will read it more thoroughly when I have less to do!) and it sounds like they should check the tryptase levels at the time of a reaction and not when the patient is fine. Kind of makes sense.

Oh well, I keep teasing my daughter that she's a medical mystery...For now we treat it like she is peanut allergic, even though it might not be the case, but this way if she has a reaction, people will react accordingly and treat her for anaphylaxis. What else can we do?

_________________
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: Wed Nov 08, 2006 11:25 am 
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Joined: Tue Mar 22, 2005 6:53 pm
Posts: 1454
Location: Canada
Yeah, if people have celiac and they are symptomatic (sometimes people are asymptomatic) then I would guess that it would be a constant problem rather than occasional. The VCD would be picked up on a spirometry test . . . but only if they test the airflow when breathing *in* as well as breathing out. (The inspiratory curve flattens out. . . the other test may be completely normal.)


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 Post subject:
PostPosted: Mon Nov 13, 2006 10:32 pm 
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Joined: Sat Apr 16, 2005 12:09 am
Posts: 1054
Nicole -- my son's only anaphylactic episode occurred this summer and what caused it is still a mystery so I can understand how you're feeling. We just assumed peanut was the cause - not clear at all where he picked it up and puzzled about the whole situation because as soon as we arrived home his hands were washed, he played for at least an hour while I prepared dinner and it was only after he ate dinner that his reaction started. All food was previously checked out as safe with manufacturers, and the newly opened items were tested by the CFIA and found free of peanut. He's eaten every item since (many times) without incident so we've ruled out new allergies. We've since had a follow-up appt. with his allergist to discuss the situation and to get his thoughts on the matter and he was as confused as we were. I had beaten myself up about not reacting quickly enough and hesitating to use the epi -- but he totally understood why I hesitated, given that he didn't have any facial swelling and no visible hives. He suggested that perhaps there was a link to his asthma -- maybe this was just a really bad asthma attack?? But he doesn't have any problems day to day, had not recently been around any of his triggering allergens, and has never reacted in this way before. And now for my point in all of this (sorry for the long lead-up) he gave us a letter to carry with us to give to the attending physician in the ER in the event that this ever happens again -- it asks that if he presents in a similar manner (an anaphylactic event without obvious skin manifestations) that a "serum tryptase" would be helpful. I don't know much about tryptase but what I've been able to find on the web says,
Quote:
Tryptase is a relatively mast-cell-specific protease that is released upon mast-cell degranulation; its serum level peaks at 1 hour postevent and may be detectable for up to 6 hours.23 If serum specimens can be obtained between 1 and 6 hours after the event, finding an elevated serum tryptase level to compare with a baseline level obtained when the patient is asymptomatic may confirm that symptoms were due to an anaphylactic/anaphylactoid reaction.
(taken from: http://www.clevelandclinicmeded.com/dis ... ylaxis.htm )

Although the test results require interpretation and it's not definitive, it can give the doctors more to go on and might be helpful in your daughter's case? Perhaps if she has another mystery episode, getting a serum tryptase can help indicate if she is, in fact, having an anaphylactic episode or a really bad asthma attack?

Does anyone else have any info about "serum tryptase" or have you or your child ever been tested in this way to help confirm an anaphylactic episode?


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 Post subject:
PostPosted: Mon Nov 13, 2006 11:55 pm 
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Joined: Fri Jan 06, 2006 8:22 pm
Posts: 154
Location: Georgia
I'm afraid have had at least a couple of draws for serum tryptase. All negative. One done right in the ER during a pretty strong reaction that was also bi-phasic. The problem is you have to get to the lab, or ER, immediately before any steroids are taken. (When I'm having a moderate, non-ana reaction my protocol is to take Benadryl and steroids.)

And I've seen several citations that tryptase is not really definative for food allergies. It's a good marker that an anaphylactic has occurred, but not that one hasn't occurred. Hope that makes sense. In the lab world, things are not always positive and negative.

Daisy


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 Post subject:
PostPosted: Tue Nov 14, 2006 10:19 am 
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Joined: Sun Mar 05, 2006 1:05 pm
Posts: 528
Location: Burlington, Ontario
Ethansmom, I think that it is a good suggestion about getting a blood test done in the E.R. for tryptase, it might help us find out more. I think it should be part of the protocol, to help determine if it was indeed anaphylaxis, although in some cases it is quite self-evident, but like in my daughter's case, it could help us find out more.

_________________
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: Tue Nov 21, 2006 8:23 pm 
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Joined: Sat Apr 01, 2006 11:21 pm
Posts: 78
Location: Connecticut, USA
I'm very sorry to read about your daughter's reaction. I'm glad she was fine. You have worked so hard trying to find the cause.

I wondered if maybe the concession worker might have been muching on some peanut foods before handeling your daughter's popcorn or maybe the seat in which she sat had peanut residue and she touched it and then touched the popcorn?

I just don't believe this stuff happens for "no reason". There has to be some reason.

I'm so glad the 'angel lady' was there.

Best wishes!


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 Post subject:
PostPosted: Wed Nov 22, 2006 9:27 am 
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Joined: Sun Mar 05, 2006 1:05 pm
Posts: 528
Location: Burlington, Ontario
Thanks Lakeswimr,

Hopefully the food challenge will give us some answers. It is weird to hope that she will have a reaction during the food challenge, but we just need to know for sure, once and for all.

_________________
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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