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Posted on: Wed, 06/14/2006 - 3:31am
Momcat's picture
Joined: 03/15/2005 - 09:00

I also forwarded the original post to my allergist to get his opinion. Here is his reply:
Thank you for the interesting e-mail. I must say that the author's recommendations remain unproven by good studies; are physiologically, pharmacologically and immunologically untenable in several respects; and in any case seem fraught with danger and thus are not recommended.

Posted on: Wed, 06/14/2006 - 3:53am
Corvallis Mom's picture
Joined: 05/22/2001 - 09:00

Well, as bad as I think the original advice posted was (as a pharmacologist, here....) I certainly hope that this person will reconsider the boards.
I would HOPE that he recognizes that we are not objecting to [i]him[/i]... only bad medical advice. He needs to keep in mind that the "doctor" label doesn't automatically awe a lot of us here... even those of us who share it. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]
Why isn't he still practicing in emergent care, anyway? Or was this a rotation during med school? No shame in doing what you're best suited for, BTW. Physiology and pharmacology isn't everyone's cup of tea.
I got the sense that he didn't like being questioned/challenged. Some doctors have a God complex at work, and cannot stand challenges to their egos. He seemed a bit hung up on being an "expert." Bit more so than on being "right," truthfully. For the record, he isn't. A medical "expert" in food anaphylaxis, that is. A psychiatric professional (in my own experience) is usually well aware of the limitations imposed by not practicing internal medicine routinely. Unless this was about seeking personal gratification via being "the expert?"
If that is the case, then he's right not to want a place here. [i]Physician, heal thyself.[/i] KWIM?
Personally? I don't expect to offer my opinion here (even professionally, which I rarely do) without evidence to back it up.
If, on the other hand, he would like to "start clean" then that has certainly been done before now! Choosing a new username and starting afresh is perfectly acceptable here. I hope he knows that. We are a very forgiving bunch, y'know... we're all in this boat together, after all.
[This message has been edited by Corvallis Mom (edited June 14, 2006).]

Posted on: Wed, 06/14/2006 - 4:09am
Momcat's picture
Joined: 03/15/2005 - 09:00

I hope that for his own sake he reconsiders his treatment plan. At the very least, someone with severe PA should not keep their medication in the car.

Posted on: Wed, 06/14/2006 - 4:48am
LisaM's picture
Joined: 11/04/2005 - 09:00

Well, yes, the original post was inappropriate given that it left the impression that the physician in question was speaking in his professional capacity. Perhaps he was just meaning to say that he is a doctor and that he has come up with an unconventional treatment that he personally follows....but if so (and I'm not clear on whether that was the original intent) he should be very very careful to clarify that he is not giving official medical advice but is speaking from his personal experience. Doctors are not self-authorizing but represent their profession. If they hand out medical advice that they have come up with on their own but has not been tested, published in a peer-reviewed journal, and widely accepted as standard practise, they could get in very, very big trouble.
But this (major) point aside, I think that the atmosphere on this thread seems a bit hostile...maybe not intentionally so, but some of the posts come across that way. And I'm not sure that it is appropriate to publish a private message on a public forum without the individual's permission.
I've noticed that conversations get heated on this board whenever anyone suggests an alternative treatment...
in my view, we should welcome all opinions especially since they won't go uncontested. We should have faith thatpeople are able to think for themselves and not worry so much that they will jump to conclusions because of one unconventional suggestion.
[This message has been edited by LisaM (edited June 14, 2006).]

Posted on: Wed, 06/14/2006 - 5:03am
Corvallis Mom's picture
Joined: 05/22/2001 - 09:00

I would say that (as a long-time poster on the boards) the real reason for the hostility was that several assumptions were made regarding the motivation and identity of the original poster... based on things said in the first post.
1. Clearly bad advice regarding anaphylaxis... and pharmacological intervention strategy. Notice many of the professionals who [i]could[/i] have commented didn't even enter the fray at this point... because we felt it was pretty obvious this must have been a person misrepresenting themselves somehow...
2. Unfortunate coincidence of username selection being too like a "quack" organization (NAET) that has targeted this board in the past... with a totally bogus "cure" for FA and frankly insulting tone that we aren't all "curing" our kids.
3. Insistence that this would be a solo post. This is usually a BIG tip-off that the person posting is misrepresenting themselves somehow to start with. (As this person should know full well if he in fact ran a BBS for some time, as he says.)
I definitely thought there was something odd about the poster's advice and supposed credentials, myself. But total imposter didn't seem right, either, as he included info in his user profile and had an e-mail addy. So I stayed out of it once it was clear that the regulars on the board understood that phenylephrine isn't epi.
So I don't think that the hostility was directed at the OP because of his "expert" status, as he supposed. It was because of (in part) history on this board that he isn't aware of.
On the other hand, I personally don't think much of his "expertise" based on what he posted, either. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] But I'm not singling him out.... I'm continuously amazed how little pharmacology many MD's retain-- if in fact they ever knew it.

Posted on: Wed, 06/14/2006 - 5:08am
Momcat's picture
Joined: 03/15/2005 - 09:00

Quote:Originally posted by LisaM:
I've noticed that conversations get heated on this board whenever anyone suggests an alternative treatment...[/b]
I think this is because so many of us have had the existence of so-called alternative treatments used against us. How many of you have heard:
"If you just (fill in the blank), your child's allergy will be cured".
"Does he really need to have the Epipen with him at all times? I know someone with PA and they just (fill in the blank)"
Yes, there is research going on about other treatments. But for now, none of this is proven or recommended.

Posted on: Wed, 06/14/2006 - 6:01am
Carefulmom's picture
Joined: 01/03/2002 - 09:00

I`m still trying to figure out how he saw his own vocal cords, M.D. or no M.D. I guess physicians can get rid of all those laryngoscopes they usually use when they need to see vocal cords, since there is apparently a way to see vocal cords without using one.
Seriously, we have several physicians on this board. None of us post medical advice, and it usually comes up that we are a physician in some other context such as Off Topic.

Posted on: Wed, 06/14/2006 - 6:28am
krasota's picture
Joined: 04/24/2000 - 09:00

I certainly wouldn't trust a doctor who didn't advocate use of the epi-pen. That said, N8 could easily be "innate", rather than NAET.
I've use inhaled epinephrine to arrest swelling of the palate, tongue, and throat. It did help, especially when I could not get to my epi-pen in time. I've used a combo of inhaled epinephrine and first gen antihistamines (not benadryl, though, I'm allergic to diphenhydramine) and had success.
But the epi-pen should be the first line of defense if the option is there. I'm an adult and can make my own decisions and I recently had a situation where I *needed* an epi-pen and couldn't find any of mine (recent purse switching). Inhaled epinephrine saved my life, but I'd have rather had the injectable.
For your children, treatment should be proactive and *fast*. Life is precious.

Posted on: Wed, 06/14/2006 - 8:35am
anonymous's picture
Joined: 05/28/2009 - 16:42

Dr. Shipko - I think your expertise in panic/anxiety issues would be of great help to many of us. Parents of food allergic children have some of the highest stress levels of any group(I think there was even a published journal study about this). I think the strong reactions from members that you have recieved illustrate how passionate we are about keeping our kids safe. It is a lifelong worry.
My son is 6 and yesterday I let him spend the whole day with his best friend's family. Of course a "normal" six year old would have already done this, but my son has life threatening food allergies. I had to really trust the people he was with, and even then, the whole day I felt sick to my stomach and nervous.
Also if you do a google of NAET you will understand the reaction your user name caused!
Be well.
mom to Ari(6) - severe nut allergies, asthma, you name it - and Maya (8), mild excema

Posted on: Wed, 06/14/2006 - 10:34am
jmarcustry's picture
Joined: 10/09/2000 - 09:00

well i'll jump in here also..i am trying very hard to undertand a couple of things..
1. i live near about an hour from boston, never did know that boston university had an e.r.? my impression it was a college.ie university unless of course it has change in the past decade or so? not?
2. if someone with a severe, severe ana reaction to the point that nothing works for that person, how on earth could you possibly have the time to drink gallons of water throw up ,use dristan, and look at your vocal cords?? ive seen reactions, experienced one with my dd and believe me there is only time to inject epi and you better be dialing 911 at the same time. i do know first instinct with ana reaction is almost panic, throat closing chest heavy etc.. you get the picture. i know that all i think about is injecting and praying that i dont die or my dd doesnt, god knows i wouldnt have time to do all of the above. JMHO. i'll happily stick to the advice of my doctor, and the 911 operator and the paramedics thank you. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
i think i must be wearing a "wonder where they went bra".


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