You are viewing Allergic Living Canada | Switch to United States

Talking Allergies

* FAQ    * Search
* Login   * Register
It is currently Mon Nov 24, 2014 5:26 am

All times are UTC - 4 hours




Post new topic Reply to topic  [ 12 posts ] 
Author Message
PostPosted: Fri May 26, 2006 8:47 pm 
Offline

Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
There is a poll on the OASG website asking if people were shown how to use their Twinject/EpiPen when they or their kids were first diagnosed. If you'd like to contribute, that would be great.

Go to http://ottawaasg.com/OASG2006/ to participate.

Thanks!

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


Top
 Profile  
 
 Post subject:
PostPosted: Sun May 28, 2006 11:28 am 
Offline

Joined: Tue Mar 22, 2005 6:53 pm
Posts: 1454
Location: Canada
for the record, i voted no.


Top
 Profile  
 
 Post subject:
PostPosted: Sun May 28, 2006 11:53 pm 
Offline

Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
I think I will set up a similar poll here soon, because now I wish I'd gotten additional info, such as "when were you first diagnosed?". I wonder if people who are diagnosed now are getting better info about how to use EpiPens than those who were diagnosed 5-10 years ago? I wonder if things have improved in the past few years....?

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


Top
 Profile  
 
 Post subject:
PostPosted: Mon May 29, 2006 4:28 pm 
Offline

Joined: Sat Apr 01, 2006 1:02 am
Posts: 164
Location: Winnipeg
ds was just prescribed with the epi-pen in January, and we received NO information. I was on the phone with the allergist to get RAST results re: peanuts and other things, and he confirmed that peanuts were an issue, and therefore ds would need an epi-pen, so his nurse would call the prescription in for us.
Afterwards, I felt bad for not using the opportunity to ask questions, but I was in a bit of shock that my little guy need an epi. Now I just feel... irritated that doctors don't seem to get what a big deal this is for parents when our children are prescribed epi-pens! :x


Top
 Profile  
 
 Post subject:
PostPosted: Mon May 29, 2006 11:12 pm 
Offline

Joined: Tue Mar 22, 2005 6:53 pm
Posts: 1454
Location: Canada
I know I've told most of this story before....but it just goes to show how many holes there can be in what sometimes seems to be a very leaky medical system.

My mom knew I had food allergies since I was an infant, but I didn't go to an allergist for some time after that. (I don't remember how old I was...maybe 6/7? I'm 30 now.) The allergist just told my mom that I needed to avoid peanuts, nuts, egg, soy. I don't know whether or not he commented on other positive results on the test. No mention of anaphylaxis or anything like that although I had had anaphylactic reactions. (hives in the throat + projectile vomiting.)

I had plenty of allergic reactions, but nothing that involved face swelling or difficulty breathing.

fast forward to when I was 15. I got into some nut-containing caramel corn. (pretty dumb, I know. my sister remembers "looking" to see whether there were any nuts. apparently we didn't see any.) full blown anaphylaxis. wasn't sure whether I should go to the hospital (at first I just had hives in the throat, a weird feeling of being out of it, nausea) or not until I started having trouble breathing....and it was getting worse and not better.

When I told my dad I needed to go to the hospital (before I said that I was "fine" in spite of involuntary gagging) he drove me to the Toronto General.... the receptionist there told us to walk across the street to Sick Kids (they don't treat children at the general)!!!! I was gasping for breath at the time. Not sure if my face had started to swell or not at that point...but it was swollen by the time I was treated at Sick Kids. Thankfully a nurse grabbed a wheelchair and literally ran me across the street.

We got a prescription for an epi at Sick Kids---but the emergency room doctor didn't really explain biphasic reactions and we didn't fill it immediately. He did indicate that the reaction could occur again when I asked him why I still had to take antihistamines for the next couple of days. I was left wondering whether the antihistamines would prevent a secondary reaction (especially because they had considered keeping me overnight at the hospital).

Unfortunately, I didn't ask any questions and just lived in fear for the next several days. I was terrified that I would wake up in the middle of the night and not be able to breathe. Several days later, we drove to my grandparents' for Christmas (a 10-12 hours drive). When we got stuck in lake effect snow I suddenly felt really closed in.....I knew that if the reaction occurred (it wouldn't of course, but I didn't know that) we wouldn't be able to get to a hospital. I hyperventilated and then when we stopped at a rest stop one side of my body (or maybe it was just my arm) was paralysed. That was totally psychosomatic---I've read about that happening under extreme stress. My parents called an ambulance....I was so embarrassed about the whole thing that I made them promise never ever to tell anyone about it.

I don't think that my parents thought that the reaction could return---I have the impression that they thought that the antihistamines would suffice. I think I would have felt a lot better if I had known that my concerns were real and that there was a procedure in place in case a reaction recurred. (i.e. if I had had an epipen and my parents were prepared to call 9-1-1 on short notice. it is *way* more stressful to be stressed but not to be sure if one has good reason to be.) As it was, I didn't even tell my parents how scared I was.

------------

I'm not sure that my family doctor ever noticed the anaphylactic episode in my medical notes. He certainly never said anything about it. But he did renew prescriptions for the epipen (without explaining anything about how to administer it....several years later, though, I did ask him.)

I did go back to that allergist once more when I was an undergraduate student. In the summer, I wanted to be a tour guide at a historic house where they also had a tea room. The job involved baking with egg and serving egg-containing products. I wasn't comfortable with that but wasn't sure if I was overreacting or not. If I'm remembering this correctly, the manager there said that they could probably arrange things so that I wouldn't have to do much cooking....but I would need to be able to serve biscuits and things. I made an appointment with my family doctor to ask whether I should avoid being in contact with egg. He sent me back to the allergist.

I was not all that impressed. They were going to test me for all foods... I didn't want the test for peanut because I know for 100% sure I am allergic. The nurse called the allergist in and I think he was kind of offended. He said that no one had ever gone into anaphylactic shock from the allergy test in all his years of practice and that if I refused the peanut test, he could not prescribe me an epipen :!: (I didn't need a prescription anyways. I'm hoping he made that comment without having reviewed any of my medical notes because it would have been clear that I needed epinephrine!)

Anyways, after testing his advice for egg was: do not eat eggs, do not touch anything made with eggs, do not be around while eggs are being cooked. (He failed to suggest any plan of action if I did happen accidentally to eat something with eggs...and didn't discuss the problem of hidden allergens (lecithin, etc.))

That's the extent of the medical advice I got about allergies until I moved to Toronto. The first allergist I went to suggested that I join Anaphylaxis Canada. I still had some *major* misconceptions about allergies, one being that it was okay to try small amounts of things that I was *slightly* allergic to as long as it just made my throat itchy. I'd stop once my throat got itchy, but sometimes I could have small amounts. (that misconception got cleared up when I reported having a reaction to a bite of banana when my allergist asked....he was shocked that I would even consider eating any banana. But seriously, I didn't know that I could have had an anaphylactic reaction to something like banana and had never heard of 'oral allergy syndrome.' )


Last edited by Helen on Tue May 30, 2006 11:01 pm, edited 1 time in total.

Top
 Profile  
 
 Post subject:
PostPosted: Tue May 30, 2006 12:27 am 
Offline

Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
Thanks Helen. Your story sure is kind of scary, if you don't mind my saying so. I think this is why patient advocacy groups are so important -- and why they are in existence. It's because patients realized at one point that if they didn't start educating each other, no one would.

I like to think that things have come a long way, but we still have a long way to go before people are consistently getting the help and info they need when they need it -- right at the moment of diagnosis.

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


Top
 Profile  
 
 Post subject:
PostPosted: Tue May 30, 2006 8:21 am 
Offline

Joined: Fri Jan 13, 2006 3:29 pm
Posts: 218
Location: Ontario
My DD was diagnosed around October of last year. The ER Dr gave me an Rx for her EpiPen but didn't show me how to use it. When I got it filled the pharmacy just gave it to me. Then I asked how to use it and the assistant called the pharmasist over and I was told "The directions are on the pen" :?

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

2 yr old DS -no known allergies!


Top
 Profile  
 
 Post subject:
PostPosted: Tue May 30, 2006 9:32 am 
Offline

Joined: Thu Aug 11, 2005 6:48 pm
Posts: 614
Location: Ontario, Canada / Cambridge, UK
My son was diagnosed 6 years ago. The ER referred us to an allergist specializing in children's allergies. The doctor gave us lots of information (handouts, websites, etc) and had an Epipen trainer in his office that we practiced using in front of him.

_________________
16-year-old son: peanuts, nuts, raw egg whites, asthmatic
Self: allergic rhinitis, fragrance/chemical sensitivities, oral allergy syndrome


Top
 Profile  
 
 Post subject:
PostPosted: Tue May 30, 2006 10:07 am 
Offline

Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
mygirlsyd wrote:
My DD was diagnosed around October of last year. The ER Dr gave me an Rx for her EpiPen but didn't show me how to use it. When I got it filled the pharmacy just gave it to me. Then I asked how to use it and the assistant called the pharmasist over and I was told "The directions are on the pen" :?


Wow, that's really not acceptable. It's one thing to take the EpiPen and leave and not ask for help (which I'm sure I did - I'm sure I was in such a fog of disbelief at that point...), but it's another to ask for help and get that kind of response. Not good. :(

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


Top
 Profile  
 
 Post subject:
PostPosted: Tue May 30, 2006 2:54 pm 
Offline

Joined: Sat Apr 16, 2005 12:09 am
Posts: 1054
I'm happy to say that when our GP heard about our trip to the ER, he gave us a prescription for an epi and told to come back in so that he could teach us how to use it! :)


Top
 Profile  
 
 Post subject:
PostPosted: Tue May 30, 2006 10:54 pm 
Offline

Joined: Tue Mar 22, 2005 6:53 pm
Posts: 1454
Location: Canada
KarenOASG wrote:
Thanks Helen. Your story sure is kind of scary, if you don't mind my saying so.


Yep, I now see how scary that story is. I probably had a close call...and I was lucky that my anaphylactic reactions before then weren't as severe.

I totally agree with your comments about the need for patient advocacy groups and about the need to give patients info. at the time of diagnosis.

Also, it might be helpful if doctors were to realize that patients who were diagnosed ages ago might not know very much about managing food allergies. Perhaps they should give out basic info. to *all* new patients regardless of whether or not they have been previously diagnosed.

Storm, your child's allergist sounds great. Handing out info. + watching the patient self-administer the epipen would be very helpful. I know that I didn't feel totally confident about my ability to administer the epipen (although I had done so already) until Allergy Expo when a pharmacist from Shoppers was on hand to watch people's technique with the epi.

---------
mygirlsyd, I'm betting that the pharmacist didn't remember how to use the epipen. In any case he/she doesn't sound very helpful. I'd probably find another pharmacy unless there was some reason why I really really wanted to shop there----it is difficult to switch doctors, but easy to switch pharmacies.


Top
 Profile  
 
 Post subject:
PostPosted: Wed May 31, 2006 11:17 pm 
Offline

Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
Helen wrote:
Also, it might be helpful if doctors were to realize that patients who were diagnosed ages ago might not know very much about managing food allergies. Perhaps they should give out basic info. to *all* new patients regardless of whether or not they have been previously diagnosed.


That is an excellent idea. Even people who were diagnosed 5 years ago would benefit from updated info.

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


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 12 posts ] 

All times are UTC - 4 hours


Who is online

Users browsing this forum: No registered users and 3 guests


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB® Forum Software © phpBB Group