Crawling Under a Rock
*Asterisked paragraphs edited to make them communicate better what I was trying to say.*
I'm feeling tired and discouraged tonight. Having an intestinal virus right on the tail of a respiratory flu virus, right on the tail of bad colds, ad infinitum to back before Thanksgiving, is getting a little frustrating. We never seem to completely recover from one thing before the next hits.
Mainly, I'm feeling like a dolt and a jerk.
I wrote that series of articles about allergy diagnosis and testing in a bad frame of mind. I was angry when I wrote it. For an article purporting to be fact based, that is not a good idea. Not good at all.
Although there are some useful facts in the articles, as a whole the series is useless--or at least several of the articles. It's not an impartial, fact-based look at the evidence. It's a vent about how bad allergists and doctors are, how they don't know what they're talking about, and how they treat people badly.
I took my own experiences and those of a number of other people I know through real life and message boards, and formed a hideously low opinion of allergists.
I wrote a post purporting to prove how bad allergy testing and treatment protocols are, taking out my frustrations in writing. It turned into a post that used so much hyperbole and emotionalism that any facts I presented faded into insignificance next to my dramatic overstatements about what they meant.
I don't think I actually had the basic facts themselves wrong, but the way I presented them did not explain or interpret them accurately. I know how to research and write better than that; I really do. But I totally flubbed this one up.
* I do want to clarify for everyone that I don't regret telling my stories and those of others. I think that is valuable and important. What I do regret is the blanket statements and value judgements I made against doctors and allergists as a whole, based on a few bad experiences, and the fact that I wasn't more careful (particularly in the first article about allergy testing) about how I presented the information from my reading.
#############################
I didn't get hit with the clue stick until an allergist responded to my post. * At first I couldn't figure out why she seemed to have such a low opinion of my articles. I began to go through and write a refutation for each of her criticisms.
* Although she did have some valid points, at first I felt the criticisms were inaccurate. Then I realized that the way I communicated and used so much hyperbole and emotionalism did in essence end up misrepresenting the facts somewhat.
For instance, I had lumped some things together that I should have differentiated, such as the around 50% specificity but more like 80-98% sensitivity of skin prick testing, or the fact that SPT has as low as 15% or worse sensitivity in diagnosing atopic dermatitis caused by certain foods. Still, I feel that even up to a 20 percent margin of error is far too large to take a stand that a single skin test (especially with a wheal in the 2 to 5 mm range) proves that a patient is not allergic to something when they have a clinical history of reacting to it.
There are a number of sources stating that anaphylaxis is underdiagnosed, undertreated and underreported, but I linked to only one. My support was largely anecdotal, which makes for a good story but isn't very convincing from a statistical standpoint.
I realized that I wasn't being specific or clear enough in my writing. I began working to remedy that.
Then I started re-reading the series of articles from an allergist's perspective.
How could I have ever thought a doctor or anyone else would listen to anything I have to say when it's presented like that?
My article series was similar to letters a lot of people write to their boss, or their next-door neighbor, or whoever else they might be really angry and frustrated by. Of course, those kinds of letters aren't meant to be sent. They're useful only in understanding and venting frustrations.
But I not only wrote the letter, I sent it. I actually submitted it to medical blog carnivals.
Suddenly I see my own arrogance, angst and abrasiveness for what it is. I feel like deleting the whole thing (if not my whole blog), crawling under a rock and never writing anything information- or research-oriented ever again.
Why didn't somebody say something before I made an utter fool of myself? At least one person (Dr. de Asis) had the guts to say something to me eventually. I am grateful for that, even though it's excruciatingly uncomfortable.
I feel that I owe all doctors (and especially allergists) everywhere, and especially those who participated in or read Pediatric Grand Rounds, an apology. I know it's highly unlikely that any of them will ever take anything I say seriously ever again. They have good reason to write me off as not worth listening to.
I am so sorry. I'm thoroughly ashamed of myself.
This frustration with allergists is new for me, and only reached its full strength a few weeks ago. That's also when I began researching allergy testing and treatment.
Until this winter I had been willing to, for the most part, trust doctors of all kinds and mostly accept their evaluation of things. I figured they were more likely than not to know what they were talking about, and certainly knew more than me.
We've had a lot of frustrating experiences with pediatricians in the course of Baby E's life. I've had a lot of frustrating experiences with doctors in my own life, both as a child and as an adult. When you have a strange unidentifiable illness, but aren't deathly ill, and the doctors throw up their hands and tell you to just live with being sick, it's hard.
In October through December of 2005 we had a whole spate of really bad experiences with medical professionals--particularly the GI specialist and the allergist. Almost unbelievably bad experiences, in some cases. Then some more frustrating experiences with nurses, radiologists, anesthesiologists, and more various medical professionals of various breeds. Then another allergist. I had a bad experience with my own doctor, too.
Since we did manage to find a pediatrician and a GI specialist that were excellent and that we enjoyed working with, I was able to get past my angst about most of the medical profession fairly quickly.
But with the allergist it was another story.
Even with him, it wasn't until well after our last appointment that I started really questioning the approach he was taking. Part of the reason for that was that our pediatrician, whom I do trust, strongly disagreed with several things the allergist said and the approach he was taking.
It wasn't until the allergist completely disregarded a truly severe allergic reaction that included multiple symptoms of anaphylaxis--diagnosing the reaction as unimportant or non-existent without even seeing or talking to me about it--that I really got frustrated.
Both board-certified allergists Baby E and I saw talked a lot about statistics, and seemed to base decisions on those rather than on our specific situations and history. Neither, I felt, took seriously the questions I asked or the symptoms I described. Rather than taking the time to explain the reasons behind their decisions, they simply said things like "nobody's allergic to rice" or "adults aren't allergic to milk" that I knew to be untrue. That frustrated me.
With our main allergist, I feel that I got off on the wrong foot with him for a couple of reasons:
When I first saw him to treat me, I gave him a copy of a list of all my symptoms that I had written up for my general practitioner doctor. I didn't feel that I had the expertise to separate out all the allergy symptoms from the non-allergy symptoms. So I thought it would be better just to give him a copy of the list (even including the symptoms that were clearly from the family Raynaud's syndrome or other such causes) and explain to him that I knew they weren't all allergy symptoms, but that I hoped he might be able to figure out which ones might be.
I had also read advice to bring to a first allergy appointment a list of everything first-degree family members are allergic to, so I did that. It was an extremely long list. I also made a list of foods I believed or suspected I myself was allergic to, which was much shorter.
Between all of them, those three lists were probably ridiculously long. I think that gave him the impression that I was either a hypochondriac, or expecting him to treat everything on my list of symptoms, even though I explained that wasn't what I was expecting at all.
Also at that appointment, I told him that I believed Baby E was reacting to very refined corn derivatives. But at that point I didn't have clear evidence or data. It was more of a suspicion, and combined with my frustration that she was still having reactions and my overwhelmedness at trying to learn how to completely avoid corn, I teared up a bit when talking about it and didn't communicate very clearly.
He did not believe me about the corn derivatives, and still does not to this day. He thought it was silly to think anyone would be THAT sensitive to corn, especially Baby E since "her welts weren't that big, so she can't be that allergic."
He flat-out refused to even consider or look into prescribing an allergy medicine that avoided those corn derivatives. He also told me that I was overreacting by avoiding soy lecithin and other "non-allergenic" soy derivatives, and that I was going to "make [myself] crazy trying to be so obsessive about it" when there was no need for that.
I felt that his demeanor toward me completely changed that day from what it had been at Baby E's first appointment a few weeks before. From then on he interacted with me in a much more patronizing manner. He began treating me like a paranoid person who overreacted to everything, and refused to take anything I said seriously.
At the next appointment, in October, Baby E had been in a screaming, flailing red or purple level for weeks and had just finished a 3-day-straight screaming jag. Another doctor we saw had said it was almost certainly from her allergies.
The allergist said it had nothing whatsoever to do with allergies, and told me I couldn't "just come running in to see him all the time like that" (that was our 3rd appointment in a 4-month period, each a month or two apart).
I broke down and cried in his office, telling him that if neither he nor the pediatricians could help Baby E, I didn't know what to do. I think my crying made matters even worse. He lectured me about how I needed to stop worrying about her fussiness and that I couldn't expect her to be as easy-going as my first two children.
By that point I'm pretty sure he had written me off as an overemotional, hypochondriac crazy lady who was imagining allergies behind every bush.
We have a chance to start over again with a new allergist in the morning. I hope we can start off better. I trust the doctor who referred us to him. I have hope that he will take a wise and knowledgeable approach, and I'm prepared to respect him. I have a specific set of questions, good evidence and documentation to explain Baby E's reactions, and slightly more knowledge about how seeing an allergist works than I did the first time.
At least I got the anti-allergist angst out of my system before seeing him. I feel quite deflated now.
I'm feeling tired and discouraged tonight. Having an intestinal virus right on the tail of a respiratory flu virus, right on the tail of bad colds, ad infinitum to back before Thanksgiving, is getting a little frustrating. We never seem to completely recover from one thing before the next hits.
Mainly, I'm feeling like a dolt and a jerk.
I wrote that series of articles about allergy diagnosis and testing in a bad frame of mind. I was angry when I wrote it. For an article purporting to be fact based, that is not a good idea. Not good at all.
Although there are some useful facts in the articles, as a whole the series is useless--or at least several of the articles. It's not an impartial, fact-based look at the evidence. It's a vent about how bad allergists and doctors are, how they don't know what they're talking about, and how they treat people badly.
I took my own experiences and those of a number of other people I know through real life and message boards, and formed a hideously low opinion of allergists.
I wrote a post purporting to prove how bad allergy testing and treatment protocols are, taking out my frustrations in writing. It turned into a post that used so much hyperbole and emotionalism that any facts I presented faded into insignificance next to my dramatic overstatements about what they meant.
I don't think I actually had the basic facts themselves wrong, but the way I presented them did not explain or interpret them accurately. I know how to research and write better than that; I really do. But I totally flubbed this one up.
* I do want to clarify for everyone that I don't regret telling my stories and those of others. I think that is valuable and important. What I do regret is the blanket statements and value judgements I made against doctors and allergists as a whole, based on a few bad experiences, and the fact that I wasn't more careful (particularly in the first article about allergy testing) about how I presented the information from my reading.
#############################
I didn't get hit with the clue stick until an allergist responded to my post. * At first I couldn't figure out why she seemed to have such a low opinion of my articles. I began to go through and write a refutation for each of her criticisms.
* Although she did have some valid points, at first I felt the criticisms were inaccurate. Then I realized that the way I communicated and used so much hyperbole and emotionalism did in essence end up misrepresenting the facts somewhat.
For instance, I had lumped some things together that I should have differentiated, such as the around 50% specificity but more like 80-98% sensitivity of skin prick testing, or the fact that SPT has as low as 15% or worse sensitivity in diagnosing atopic dermatitis caused by certain foods. Still, I feel that even up to a 20 percent margin of error is far too large to take a stand that a single skin test (especially with a wheal in the 2 to 5 mm range) proves that a patient is not allergic to something when they have a clinical history of reacting to it.
There are a number of sources stating that anaphylaxis is underdiagnosed, undertreated and underreported, but I linked to only one. My support was largely anecdotal, which makes for a good story but isn't very convincing from a statistical standpoint.
I realized that I wasn't being specific or clear enough in my writing. I began working to remedy that.
Then I started re-reading the series of articles from an allergist's perspective.
How could I have ever thought a doctor or anyone else would listen to anything I have to say when it's presented like that?
My article series was similar to letters a lot of people write to their boss, or their next-door neighbor, or whoever else they might be really angry and frustrated by. Of course, those kinds of letters aren't meant to be sent. They're useful only in understanding and venting frustrations.
But I not only wrote the letter, I sent it. I actually submitted it to medical blog carnivals.
Suddenly I see my own arrogance, angst and abrasiveness for what it is. I feel like deleting the whole thing (if not my whole blog), crawling under a rock and never writing anything information- or research-oriented ever again.
Why didn't somebody say something before I made an utter fool of myself? At least one person (Dr. de Asis) had the guts to say something to me eventually. I am grateful for that, even though it's excruciatingly uncomfortable.
I feel that I owe all doctors (and especially allergists) everywhere, and especially those who participated in or read Pediatric Grand Rounds, an apology. I know it's highly unlikely that any of them will ever take anything I say seriously ever again. They have good reason to write me off as not worth listening to.
I am so sorry. I'm thoroughly ashamed of myself.
This frustration with allergists is new for me, and only reached its full strength a few weeks ago. That's also when I began researching allergy testing and treatment.
Until this winter I had been willing to, for the most part, trust doctors of all kinds and mostly accept their evaluation of things. I figured they were more likely than not to know what they were talking about, and certainly knew more than me.
We've had a lot of frustrating experiences with pediatricians in the course of Baby E's life. I've had a lot of frustrating experiences with doctors in my own life, both as a child and as an adult. When you have a strange unidentifiable illness, but aren't deathly ill, and the doctors throw up their hands and tell you to just live with being sick, it's hard.
In October through December of 2005 we had a whole spate of really bad experiences with medical professionals--particularly the GI specialist and the allergist. Almost unbelievably bad experiences, in some cases. Then some more frustrating experiences with nurses, radiologists, anesthesiologists, and more various medical professionals of various breeds. Then another allergist. I had a bad experience with my own doctor, too.
Since we did manage to find a pediatrician and a GI specialist that were excellent and that we enjoyed working with, I was able to get past my angst about most of the medical profession fairly quickly.
But with the allergist it was another story.
Even with him, it wasn't until well after our last appointment that I started really questioning the approach he was taking. Part of the reason for that was that our pediatrician, whom I do trust, strongly disagreed with several things the allergist said and the approach he was taking.
It wasn't until the allergist completely disregarded a truly severe allergic reaction that included multiple symptoms of anaphylaxis--diagnosing the reaction as unimportant or non-existent without even seeing or talking to me about it--that I really got frustrated.
Both board-certified allergists Baby E and I saw talked a lot about statistics, and seemed to base decisions on those rather than on our specific situations and history. Neither, I felt, took seriously the questions I asked or the symptoms I described. Rather than taking the time to explain the reasons behind their decisions, they simply said things like "nobody's allergic to rice" or "adults aren't allergic to milk" that I knew to be untrue. That frustrated me.
With our main allergist, I feel that I got off on the wrong foot with him for a couple of reasons:
When I first saw him to treat me, I gave him a copy of a list of all my symptoms that I had written up for my general practitioner doctor. I didn't feel that I had the expertise to separate out all the allergy symptoms from the non-allergy symptoms. So I thought it would be better just to give him a copy of the list (even including the symptoms that were clearly from the family Raynaud's syndrome or other such causes) and explain to him that I knew they weren't all allergy symptoms, but that I hoped he might be able to figure out which ones might be.
I had also read advice to bring to a first allergy appointment a list of everything first-degree family members are allergic to, so I did that. It was an extremely long list. I also made a list of foods I believed or suspected I myself was allergic to, which was much shorter.
Between all of them, those three lists were probably ridiculously long. I think that gave him the impression that I was either a hypochondriac, or expecting him to treat everything on my list of symptoms, even though I explained that wasn't what I was expecting at all.
Also at that appointment, I told him that I believed Baby E was reacting to very refined corn derivatives. But at that point I didn't have clear evidence or data. It was more of a suspicion, and combined with my frustration that she was still having reactions and my overwhelmedness at trying to learn how to completely avoid corn, I teared up a bit when talking about it and didn't communicate very clearly.
He did not believe me about the corn derivatives, and still does not to this day. He thought it was silly to think anyone would be THAT sensitive to corn, especially Baby E since "her welts weren't that big, so she can't be that allergic."
He flat-out refused to even consider or look into prescribing an allergy medicine that avoided those corn derivatives. He also told me that I was overreacting by avoiding soy lecithin and other "non-allergenic" soy derivatives, and that I was going to "make [myself] crazy trying to be so obsessive about it" when there was no need for that.
I felt that his demeanor toward me completely changed that day from what it had been at Baby E's first appointment a few weeks before. From then on he interacted with me in a much more patronizing manner. He began treating me like a paranoid person who overreacted to everything, and refused to take anything I said seriously.
At the next appointment, in October, Baby E had been in a screaming, flailing red or purple level for weeks and had just finished a 3-day-straight screaming jag. Another doctor we saw had said it was almost certainly from her allergies.
The allergist said it had nothing whatsoever to do with allergies, and told me I couldn't "just come running in to see him all the time like that" (that was our 3rd appointment in a 4-month period, each a month or two apart).
I broke down and cried in his office, telling him that if neither he nor the pediatricians could help Baby E, I didn't know what to do. I think my crying made matters even worse. He lectured me about how I needed to stop worrying about her fussiness and that I couldn't expect her to be as easy-going as my first two children.
By that point I'm pretty sure he had written me off as an overemotional, hypochondriac crazy lady who was imagining allergies behind every bush.
We have a chance to start over again with a new allergist in the morning. I hope we can start off better. I trust the doctor who referred us to him. I have hope that he will take a wise and knowledgeable approach, and I'm prepared to respect him. I have a specific set of questions, good evidence and documentation to explain Baby E's reactions, and slightly more knowledge about how seeing an allergist works than I did the first time.
At least I got the anti-allergist angst out of my system before seeing him. I feel quite deflated now.
Copyright 2009. All rights reserved.
Posted by purple_kangaroo at 11:59 PM[Permanent link]
12 Comments:
I honestly don't think you did anything wrong in what you did with your allergist. I think your allergist just wasn't a good doctor.
You did your job at informing him.
I've also noticed though that when presenting a doctor with symptoms, I seemed to get more answers if I concentrated on a few major symptoms. Doctors tend to easily write off patients as hypocondriacs.
And boy do I wish sometimes that it was all in my head. :)
Sometimes crying in a doctor's office can't be helped. I am amazed though that he didn't recommend some kind of "therapist" for you.
Being up with a constantly crying baby for days/weeks, is excuse enough to cry anywhere you please. :)
I see how they see it, but I wish they would see how you saw it. Especially when doctor after doctor after pharmacist ignored your baby's symptoms and needs.
What with all that you had going on, you would have had to be a Vulcan or something in order to behave perfectly at all times! I understand your feelings of shame at your non-objective writings, but understand that you were doing the best you could at the time, and "the best you can" is not always perfect.
If it's possible to apologize to the carnival doctors, and if it would help you clear your conscience, then do so. But otherwise, the worst thing you've done to them is hurt their feelings and if they can't get over it then they have some serious problems.
But seriously, I don't know that I would still be in one piece after all the screaming, pain, and misery that you've gone through. It's been a really tough time in your life and you shouldn't beat yourself up for not being able to behave perfectly under those circumstances. You're a really kind person, I can tell, and you don't deserve to be treated like crap, especially by yourself.
OK - I can't speak for anyone else involved with PGR.
However, PGR is about the perspective of all the different people who have some involvement in paediatric healthcare and wellbeing. I felt that you gave a fine overview of your frustrations with your experience of allergy testing and the experiences that you had had with allergists.
There is a discussion going on in various blogs about vaccination and whether people who are pro-vaccination "suck" (to use Dr. Flea's elegant term) at getting the message out because they don't understand the parents' perspective. Neonatal Doc frequently returns to the problem of just how much information about outcomes do you give parents of premature children? How much can they cope with given the high level of stress that comes with a seriously ill baby? But what can you do when you need to make sure that the parents are fully informed?
I felt that Dr. de Asis didn't dismiss your concerns - I thought that she gave a thoughtful response to the factual parts of it.
You were writing as a parent and from your own experience. I found those experiences interesting as lessons in how not to communicate with parents. I can't believe that alienating parents does any good for the therapeutic alliance that children need.
I have colleagues who are very abrasive and confrontational with parents over various matters. They have been known to use the word stupid. Now, I might not agree with some parents, but I do want to understand the thinking that led to an action or belief.
For instance, we have very few clinical allergists in the UK (seriously, we have 6 with some more in training). Most parents in the UK resort to allergy testing for which there is no/negligible scientific support. I meet parents who tell me that their little one has tested as allergic/intolerant to about 80 foodstuffs and they have restricted the diet accordingly.
All I can do under those conditions is talk to the parents about the test that they used and offer them information about validated allergy testing. I always ask them to discuss their concerns about allergy/intolerance with their GP.
Reading round the blogs, you do sometimes read about encounters with healthcare professionals that make you think, "I hope that I don't come off as insensitive and overbearing while still managing to advocate for the child's health".
This comment is getting far too long. I'll close by saying that I'd come out from under your rock as soon as you are ready - but that's my opinion.
Regards - Shinga
Don't be too hard on yourself, PK. It was a blog carnival, not a medical journal.
Blogging is a work in progress. If your original post failed to say what you intended, try again.
Not that I don't understand the desire to hide under a rock. I've written posts that I've later regretted. Of course, it never fails that those are the ones that get linked. Ugh.
Don't be so hard on yourself.
I think it would be near impossible for anyone in your situation to be able to discuss these matters without bringing their emotion. Baby E obviously has a number of issues and you have dealt with many bad/dismissive/insensitive doctors.
You are trying to protect Baby E and doing a wonderful job. Remember that when you want to beat yourself up over how you come off to doctors on-line.
Your little girl is blessed to have you as her mom. You listened to your insticts even though everyone told you nothing was wrong. Your daughter is now doing so much better because you were persistent. Try not to be to hard on yourself. I will lift you up in my prayers.
What Casey said. It's a blog carnival, not a medical journal. Though I suspect that if you polled a bunch of medical journal editors, they would each have plenty of examples of submissions that were completely filled up with teh crazy -- stuff that makes what you wrote look like peer-reviewed research in comparison.
Your anger was justified, even if you regret the forum in which you expressed it. There is a power imbalance between doctor and patient, and some doctors are extremely poor at negotiating that power imbalance with sensitivity. It never hurts to remind the members of that august profession that their patients are not any less worthy of being taken seriously for not having been through medical school themselves.
Von, yes I do think my allergist wasn't a good doctor, or at least that he didn't respond well to me. I didn't really think I did anything wrong per se with him--but I think I know how to present myself a little better now to hopefully raise my chances of being treated with respect.
Liz, thanks. I wish they would try to see the patient's perspective more too.
Rebecca, thank you. I may consider submitting some sort of follow-up to the next PGR.
Shinga, thank you very much for your comments. Regarding Dr. de Asis, I don't think I communicated what I meant to in my post above and have reworded those two paragraphs now.
I was trying to portray my initial impression, but it didn't end up clear that my impression changed as I took a closer look at my own writing. I think that Dr. de Asis was right, and that I misrepresented the facts by using too much hyperbole, etc. I do disagree with her that, for instance, 80-90% accuracy is truly reliable when the results possibly disagree with clinical symptoms.
I agree with you that she gave a thoughtful response to the factual parts, and I greatly appreciate that.
I do find it sad that she doesn't appear to think a patient should be reading medical research and trying to understand and write a blog post about it, but I can understand why she would respond that way to my post.
Your comment wasn't too long at all. Thank you for posting it.
Casey, thanks. I like what you said about blogging being a work in progress.
CCW, thanks. At least I'm pretty sure I don't come across that way to most doctors in person--at least until I have to really argue with them about something like dextrose IVs--then I have to politely stand my ground, and people don't always like that.
B in Portugal, thanks. I'm so glad Baby E is doing better.
Phantom-Scribbler, thanks. You're right. That power imbalance really becomes a problem with doctors who don't listen well or don't repect the patient enough, I think.
I do want to clarify for everyone that I don't regret telling my stories and those of others. I think that is valuable and important. What I do regret is the blanket statements and value judgements I made against doctors and allergists as a whole, based on a few bad experiences.
Your children are very blessed to have you as their protector. 3 of my boys are allergic to everything but 10 foods. Prior to eliminating these foods they had Autistic Spectrum Disorder in addition to allergy symptoms. We took them to Pfeiffer Treatment Center for biomedical interventions including heavy nutritional supplementation and amino acid replacement therapy, and we've seen dramatic improvements. It's my understanding that with the amino acids, they should be able to have a normal diet in the future. Thanks for the glycerine info.
Dawn
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