Did your Doctor tell you about peanutallergy.com?

Posted on: Thu, 06/19/2003 - 10:55am
Danielle's picture
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Joined: 04/08/2003 - 09:00

I so wish that my allergist or pediatrician had told us about this site at the beginning. I look back and really thank God for coming across this site. There was about a 6 week period of time between her diagnosis and finding peanutallergy.com. We even went on holiday and stayed at a resort. What would have happened if we had flown on a plane????? We were careful but my God I was clueless!!!!!! I am so lucky that nothing happened to her. I am just curious to how many people found peanutallergy.com by themselves and how many were told to go directly to it by their Doctor.

Posted on: Thu, 06/19/2003 - 11:18am
becca's picture
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Joined: 05/22/2001 - 09:00

We were advised about FAAN, and a New England asthma and allergy network and given materials on upcoming lectures and such in the area.
My allergist is very aware of this site, and answers questions that have been prompted by this site, but I distinctly notice he does not endorse it. Not sure why. He is quite concerned about stress and PA/asthams/food allergies and had a survey he was handing out regarding these things. It was part of a research study. Part of it was addressing where you get info, how helpful, and how stressful, etc... So, I find he directed us and is concerned about support even if not referring us to this particular resource. becca

Posted on: Thu, 06/19/2003 - 11:41am
Claire's picture
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Joined: 04/19/2000 - 09:00

I really hate to tell you what my doctor said but i will be honest. They said not to go on here and take the information as if it was coming to you from a doctors office with actual facts. They also told me that if I had questions i should go to them first not to go here and get Advice from people that are not licensed.
I kind of understand what they mean,but the part of sharing with others on this site is just great for me.

Posted on: Thu, 06/19/2003 - 12:15pm
deeanne26's picture
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Joined: 11/06/2000 - 09:00

My Allergist was concerned that since this was a ".com" site it was owned by companies that would promote the wrong message. I have told him more than once that I have enjoyed the sharing and what a great resource this site has been.

Posted on: Thu, 06/19/2003 - 12:34pm
anonymous's picture
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Joined: 05/28/2009 - 16:42

Doctors routinely discourage using the internet to research medical disorders, sometimes for good reason! The internet is full of snake oil cures and baffling allergy information. The information here is considered "support group" level, I guess, in that our anecdotes help others deal with the feelings and exclusion we sometimes deal with.
Chris Papkee does not endorse using this site as a source of medical information and says so on PA.Com's home page. That's why the medical community doesn't recommend it. A member who is disingenuous could post any number of false facts about PA - this is a public board with no restriction on who joins and contributes.
The internet itself is "caveat emptor" and for good reason - you have to wade through a lot of junk to get to the good stuff. It's enough that this site provides support - I don't think allergists need to recommend it, because a recommendation may sound like an endorsement, and how can he/she endorse something when he/she has no control over the content?
Welcome to the site anyway, Danielle, and I hope you continue to find it a valuable "cog in the wheel" in your search for ways to deal with PA.
Carolyn [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
[This message has been edited by Cayley's Mom (edited June 19, 2003).]

Posted on: Thu, 06/19/2003 - 12:36pm
wendysco's picture
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Joined: 05/03/2003 - 09:00

I have been met by smiling nods when I mention this site to the white coats. I understand about us not being doctors here and we talk about medical issues, but honestly I believe it is all food for thought. Some tips/advice work for us, some doesn't. I have found a great many helpful things, at the very least I've sometimes tried a different avenue that I may not have thought of on my own. I think this is a great place and I appreciate all the advice from more experienced "peanut parents", you have given me perspective and hope, and confidence that I can protect my kids.

Posted on: Thu, 06/19/2003 - 1:17pm
virginia mom's picture
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Joined: 03/12/2003 - 09:00

My daughter has been seeing an allergist for her asthma and PA for the past four years and it was only last summer that he recommended FAAN. It's only been since the beginning of this year that I found PA.com. Both have been a great source of information and comfort - that's why it's so surprising when I come across parents of PA allergic kids who do not carry Epi-pens or claim that their child's PA is "minor". We really need these websites to share our experiences.

Posted on: Fri, 06/20/2003 - 12:18am
MeCash's picture
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Joined: 04/18/2001 - 09:00

I found this site myself shortly after my son's dx. During my last visit to our pediatrician, I told her about this site and how wonderful it is and she wrote it down and thanked me for the information. I also told her about the SIDgroup on yahoo for Sensory Integration Dysfunction and she was thrilled to learn about both these sites to recommend to her patients.
~Melanie

Posted on: Fri, 06/20/2003 - 1:29am
Peg541's picture
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Joined: 12/29/2002 - 09:00

We revisited our allergist yesterday after a long absence. One of DS questions was "are there any other PA patients in your practice?" His answer "of course, for years now."
All those years we felt so alone, learning everything we learned alone with NO support and this guy is sitting on other PA kids and saying nothing!
I am sure we asked more than once over the years. We were there three days a week for allergy shots.
I was careful to NOT mention the internet during our visit yesterday but I let it slip once and he rolled his eyes.
Peg

Posted on: Fri, 06/20/2003 - 1:30am
river's picture
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Joined: 07/15/1999 - 09:00

FAAN is no different from PA.com in that they also have a disclaimer saying that they "disclaim any responsibility for any adverse effects resulting from the information presented on this website."
They are not medical experts on peanut allergy and do not claim to be, (at least in small print.)
I wonder if any of those doctors who have something negative to say about PA.com have actually been here to see exactly what is going on, or is it just old-lady-gossip they rely upon.

Posted on: Fri, 06/20/2003 - 1:34am
katiee's picture
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Joined: 05/09/2001 - 09:00

Well said River, I completely agree!
Katiee

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