Trust your allergist?

Posted on: Wed, 01/24/2001 - 8:01am
PeanutKate's picture
Joined: 05/24/2000 - 09:00

p[This message has been edited by PeanutKate (edited January 25, 2001).]/p

Posted on: Wed, 01/24/2001 - 11:50am
anonymous's picture
Joined: 05/28/2009 - 16:42

I have just finished reading an editorial in a special "Kids' Health" issue of the Feb 2001 Today's Parent. Here is the first line of the editorial, which is entitled "When Will Support Become Part of Medical Treatment?":
"Doctors do a lot of good but there's one area where they are not getting the job done: helping to connect families of children with rare diseases."
Another section of the editorial:
"Obviously, a physician's primary focus is the practice of medicine - diagnosis and treatment. But that's not all patients need. While you are waiting for a diagnosis, waiting for your child to get well or dealing with the day-to-day consequences of a chronic disorder, you still have to live. You have to get through the crises, the uncertainty and the nitty-gritty daily care. Some doctors are good at providing emotional support, though they can't hold their patients' hands all the time. But peers can, because they've been through the same experiences. And the medical system has the capacity to help these families connect."
I take safeguards before I post medical information. I make sure the source is reputable, then I either post a weblink, or I bookmark the site. If what I have to say isn't medical fact, I am careful to say "in my opinion" or "in my experience". I am aware that some people do not do this, but it is a support site, not a medical database from which to retrieve a definitive answer.
People on this site give conflicting answers because they get conflicting answers from their allergists. Asking them to confront their allergist will work for some people, but most of us are intimidated by medical professionals. This is a support site, with a disclaimer that none of the posts should be taken as medical advice. Perhaps the disclaimer should be in bigger, bolder letters. Perhaps it should be on the Main Discussion Board page, and not just on the Home Page.
As for "not liking" an allergist's advice, I always recommend everyone be extremely proactive in their own health care. If my doctor says something to me that I feel isn't right, a red flag goes up. I believe it's called instinct (maternal instinct, perhaps). The point I'm trying to make is YOU know your body; YOU know your child's body better than anyone. Doctors can be wrong, and a site like this provides invaluable experiences for comparison.
In answer to your question, I do communicate well with Cayley's allergist - he made sure I understood the seriousness of PA before we left the office clutching our EpiPen prescription. He also didn't refer me to a support group - this site is my support group.
This is not the first time you have posted with your concerns that people will blindly follow all the advice on this site. Fortunately, most people reading this are levelheaded enough to know it's not gospel. Perhaps you could take up your concerns with [email][/email] and he could come up with a more noticable medical disclaimer, otherwise, I think you have to give the members of this site more credit.

Posted on: Wed, 01/24/2001 - 12:31pm
morgansmom's picture
Joined: 04/29/2000 - 09:00

There is a link on this site called "Doctors Need More Information". This link exists because there are a ton of doctors and yes, allergist who do not get it! Yes, even allergists! Just like any other doctor, an allergist can be bad too; misinformed, not updated, or just plain poor!! Anaphylaxis is serious business and I don't think any one of us wants to settle for less than we deserve in a doctor, when our children's lives are at stake. If a recommendation or prescription sounds a little wacky, how nice it is to bring it here to see what others are doing. Perhaps even confirm that your doctor's advice sounds right or wrong!
For me, if I'm wondering if the doctor's advice is out of wack, and then receive confirmation from other parents who are dealing with the same issue, I try to further discuss it with the doctor. I also research the information as best as I can. If he's still not working with me, and doing the best for my child, I FIRE HIM! ...and move on!! It's plain and simple!!
I've been through hell and back with doctors. The worst being one who insisted that I continue to feed the allergen to my child! 3 pediatricians and 2 allergist later and yes, I have a fabulous pediatric allergist doctor. My child has never been healthier and I have been with this doctor for 3 years now. Now, that I have developed a trusting relationship with this doctor, should he tell me something that seems a bit out of whack (which he hasn't), I would discuss with him, possibly research it and probably take his advice in the end.
For me, the advice you get here are other parents advice. Certainly I would not just take another parents advice over my doctors without further discussion with doc and other research. ...but the advice you receive here is essential to the whole spectrum of information you gather. ...because the truth remains there are ALOT of poor doctors out there! ...and we all have to take care of ourselves!!
Now with that being answered a few questions for you. Do you communicate well with your allergist Peanut Kate? ...cuz I'm having a hard time figuring out your intent for this post!! What is the question here? Do you really care about whether we trust our allergists? Are you really just wondering if we are taking care of our own medical conditions when we don't like our docs advice? Cuz somehow I don't think this was a question for mere consensus purposes. It seems each time you post it is either negative or condescending or finger pointing. You have made 23 posts since May 2000 of which almost all have been in this tone. You use your therapist tone when asking, "What ideas do you have for fixing that relationship" if many of us were children.
I wonder if your real motivation for writing this post is to once again bring up the "when to use an epi pen" issue that you have hashed out in the past. We already know Peanut Kate, that you think there is only one way to treat everything from a rash to a full blown anaphylactic reaction. ...but others disagree, yes, even good allergists. You see a full range of answers because everyones emergency plan is tailored individually. The only common link being two symptoms or more and epi.
I would guess that your son or daughter rarely deals with hives or rashes. Some of us deal with this on a regular basis and epi pen administration would be ridiculous!
Sorry to go on, but it frustrates me when you act high and mighty, and like you have all the answers. I really didn't want to stir the pot, but I know in a couple of months you'll be back here again, with your condescending tone so thought what the heck I'd give you a chance to explain yourself, maybe I'm all wet! [img][/img]

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