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Posted on: Tue, 06/13/2006 - 3:32pm
Peg541's picture
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Joined: 12/29/2002 - 09:00

Please understand this. We have many members here dealing with PA and very small children. The only information they get is from their physicians. They HAVE to believe their physicians because we all have to trust someone. It is too scary to think your physician might steer you wrong.
You posted information that was frankly way out there and it is frightening to think some mother or father here could take that to heart and try some of your methods for their child instead of the tried and true recommended epi pen, Benadryl, call 911.
I know you said this was your unique personal experience. Still you threw up enough red flags to make many of us very uneasy.
Peggy

Posted on: Tue, 06/13/2006 - 4:29pm
Corvallis Mom's picture
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Joined: 05/22/2001 - 09:00

Well, also in my professional opinion,
Phenylephrine (correctly identified as the major ingredient in several nasal decongestant preparations) IS NOT THE EQUIVALENT of EPINEPHRINE/ADRENALINE chemically or (more importantly for the purposes of this discussion) [i]pharmacologically[/i].
You [i]may[/i] be a physician. You are clearly NOT a pharmacologist or a medicinal chemist... or you would never have identified these two drugs as interchangeable for one another.
THEY ARE NOT THE SAME.
[b] Phenylephrine is not adrenaline/epinephrine, and it doesn't substitute for it![/b]
My name and credentials are available to anyone who would like to contact me off the public boards. I will not violate my child's privacy by posting them here... suffice it to say that I have a terminal degree in chemistry, have been a professor at a research university, and work as a pharmacologist. I routinely work with beta antagonists and agonists, including epinephrine.
Mostly, I post here as a parent. Now I do so as a professional. I expect that our resident practicing pharmacist will also concur. Primatene mist is the only OTC preparation I am aware of that currently (US) contains epinephrine. Period.
The perspective you have as a [i]mental health professional[/i] is fabulous! A great many of us have literally held our children and known they were dying in our arms. If that can't trigger PTSD, panic disorders, or major depression, then I don't know what can... oh, wait, I do. The constant strain of dealing with a toddler with multiple common foods which are anaphylaxis triggers. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]
Seriously-- so allergy isn't your specialty. That is fine. I value your experiences as a PA adult-- particularly one with a psychiatric specialty. Many of us have had terribly negative experiences with therapists who have told us to just "lighten up." Someone with first hand knowledge of anaphylaxis isn't likely to feel that way.
[This message has been edited by Corvallis Mom (edited June 14, 2006).]
[This message has been edited by Corvallis Mom (edited June 14, 2006).]

Posted on: Tue, 06/13/2006 - 10:54pm
LisaM's picture
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Joined: 11/04/2005 - 09:00

N8Healer, when reading your original post about how severe your most severe reaction was, I was wondering how long it took before you were treated with epinephrine. It sounds like it could have been awhile. When I was in highschool, I had a very scary reaction...I did not have an epipen at the time and it took me awhile to decide to go to the hospital. (I had had milder anaphylactic events before and had been diagnosed as a child with severe food allergies...but the word "anaphylaxis" never came up in medical appointments.)
I was in respiratory distress and was quite swollen, and the first dose of adrenaline had absolutely no effect....thankfully the second kicked in. I had gone through most of my life thinking that I was just extremely allergic and that there was the chance that the epipen might not be effective in my case. But I learned recently (from the podcast from Dr. Peter Vadas at allergicliving.com) that it is more common to require more than one shot of adrenaline than one might think. In fact, all people with anaphylaxis are advised to carry two.
And my current allergist says that if I had been treated immediately as opposed to 20 minutes after the reaction started that I would have probably been fine. There are no guarantees, but the sooner we take the epipen the more remote the chances are that we will die.
I'd suggest trying the epi first before the other treatments.
Another alternative treatment to the epi:
[url="http://www.allerg.qc.ca/peanutallergy.htm#charcoal"]http://www.allerg.qc.ca/peanutallergy.htm#charcoal[/url]
"Activated charcoal forms non IgE binding complexes with peanut proteins, is the title of a study by Vadas and Perlman in the July 2003 J Allergy Clin Immunol. They report that activated charcoal adsorbs to peanut proteins, forming insoluble complexes that no longer allow the peanut proteins to bind IgE. These data suggest that administration of activated charcoal soon after accidental ingestion of peanut might be a useful adjunct in the management of peanut-induced anaphylaxis. This approach is likely to be applicable to the prevention of more severe and prolonged anaphylactic reactions to other foods as well."
I don't think the activated charcoal (which I hasten to add is not at all the same as regular charcoal) is necessarily a good idea for those of us who can take the epi. But some people can't use the epi---people on beta blockers, for instance.

Posted on: Tue, 06/13/2006 - 11:43pm
Carefulmom's picture
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Joined: 01/03/2002 - 09:00

N8healer, how does your malpractice carrier feel about you dispensing medical advice on the internet? It is so hard to find a carrier that covers that sort of thing. So you must have a carrier that covers it, or you would not be dispensing medical advice, especially when you don`t currently practice in the field of food allergy. I don`t know of any carriers that cover it, so which one does?

Posted on: Wed, 06/14/2006 - 3:29am
Momcat's picture
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Joined: 03/15/2005 - 09:00

I just received an interesting email from Dr. Shipko. I had emailed him to verify that he was indeed posting under the name N8healer. Here is the reply I received:
Quote:
I posted the information, yes. I think that the information is excellant. As I posted, I was an attending in emergency medicine for Boston University as well as having my own very severe problem. Given all of the negative feedback I have received, I request that the thread be deleted and unregister me from the site. As I wrote, I wanted to share my knowledge and experience. If it is not helpful to others then it serves no purpose and should be deleted. I must say that your group is narrow minded and antagonistic and this is the first time that I have extended myself to share information and have had this sort of response. I think that my addendum posts, which included my name and the advice to discuss this with their physicians makes it clear that I am not instructing people to abandon their own strategies in favor of the one I have suggested.
Over the years I have given generously of my time and experience to help share useful medical information. I am sorry if I have been misinterpreted. Medically the advice I gave is quite sound. Given the antagonism and negativity, I would feel most comfortable with the whole thread being deleted. Please take my registration/information out of your database I will not be posting again!
Sincerely,
Stuart Shipko, M.D.
Cathy
------------------
Mom to 7 yr old PA/TNA daughter and 3 1/2 yr old son who is allergic to eggs.

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

I also forwarded the original post to my allergist to get his opinion. Here is his reply:
Quote:
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.
Cathy

Posted on: Wed, 06/14/2006 - 3:53am
Corvallis Mom's picture
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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.
[img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
[This message has been edited by Corvallis Mom (edited June 14, 2006).]

Posted on: Wed, 06/14/2006 - 4:09am
Momcat's picture
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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.
Cathy

Posted on: Wed, 06/14/2006 - 4:48am
LisaM's picture
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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
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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.

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