A Journey to the Medical Netherworld
April 18, 2016 3:29 AM   Subscribe

Having a sick child is never easy. But if your child has to be sick, hope for something mechanical: a broken bone, a gash that needs stitches—something that can be physically mended. Failing that, wish for something commonplace. Chickenpox, a bladder infection, bronchitis. Doctors can manage these things with their eyes closed. If pushed, consider the merits of illnesses that are at least well understood—illnesses that can be definitively diagnosed and have generally agreed-upon courses of treatment. What you least want is something obscure, something not yet well characterized—and least of all, something both obscure and pertaining to the mind.
posted by ellieBOA (59 comments total) 32 users marked this as a favorite
We have learned that you can't leave managing your healthcare to the doctors. You have to be your own advocate. This can be a surprise to people who haven't dealt with a chronic illness.
posted by LoveHam at 4:31 AM on April 18, 2016 [13 favorites]

Sometimes I feel like one of the most important things a person has to learn in life is that you often have to just about throw a fit to get medical personnel to take you seriously. (Especially if you're female, although that's a topic for a whole different post.)
posted by MexicanYenta at 4:45 AM on April 18, 2016 [16 favorites]

This is a fascinating article. The author does a fantastic job of laying out the frustration that parents experience when dealing with these kind of mental health issues, dealing with multiple and conflicting opinions from the professionals they encounter along the way. I've worked with a number of young clients with these type of symptoms/behaviors, now I want to reevaluate the possibility of PANDA being involved. Thanks for posting this.
posted by HuronBob at 5:03 AM on April 18, 2016 [3 favorites]

"Strangely, although the coordinator thought the problem was our parenting skills and the key was strict discipline, she never inquired about those things. She never heard about kids who weren’t allowed to watch more than thirty minutes of TV in a day, and often watched none, kids who were disciplined enough not to eat chocolate after 5 p.m., even a coating on a cookie, because it kept them awake. She didn’t know that our kids had a strict bedtime routine, followed rules about outdoor play and used no foul language. She didn’t know that they were routinely praised by hair stylists, swimming pool staff and librarians, for their impeccable behaviour. She just made assumptions."

Uggggh, this makes me crazy. One of my kids has some developmental issues and this happens EVERY TIME we start with a new professional. "So, first things first, no more soda, the caffeine is terrible for them." "Um ... they're only allowed 7-Up, and only when they have the stomach flu." "You need to be more strict about an earlier bedtime." "They go to bed at 7 and 8, no exceptions." "Well we often see this kind of misbehavior when boys are allowed to watch superhero --" "Yeah, no superheroes, still just Disney and PBS Kids."

It's like when you ask a question on AskMe and say, "I've got [common illness], and I've tried all the first line remedies, including X, Y, and Z," and 12 people chime in to go, "Have you tried X, Y, and Z?????" It's like "Look, lady, if it were as simple as cutting out caffeine, someone probably would have mentioned that at some point in the last three years since it is literally the first thing we get told every single time and in every medical intake form, 10 of which you have in your hot little hands, it says 'Child does not consume caffeine.'"

Sometimes they don't let you interrupt and they spend a good ten minutes explaining how you need to enforce an early bedtime around 8:30 p.m. because even though kids don't want to go to bed before 9 or 10, they really MUST ... only for you to say apologetically at the end of the spiel, "He goes to bed at 8, I'm very old-fashioned."

In the end the most efficient doctors/therapists are the ones where they spend an hour doing intake and ASK the questions instead of ASSUMING the answers, and then move on from there. Instead of spending five appointments with them suggesting irrelevant things because they didn't bother with intake because 90% of parenting problems fall into the same handful of categories and it's usually faster to tell parents to fix those things, they actually spend an hour on intake and we can jump right to the ACTUAL problems.
posted by Eyebrows McGee at 6:05 AM on April 18, 2016 [53 favorites]

Huh. I immediately thought of PANDAS, as I have a relative who's mentioned working with kids with the diagnosis (in a non-specific sort of way), and how weird it is that strep can cause these symptoms. I had no idea it was that controversial.
posted by pie ninja at 6:31 AM on April 18, 2016 [1 favorite]

Sometimes they don't let you interrupt and they spend a good ten minutes explaining how you need to enforce an early bedtime around 8:30 p.m. because even though kids don't want to go to bed before 9 or 10, they really MUST ... only for you to say apologetically at the end of the spiel, "He goes to bed at 8, I'm very old-fashioned."

God, yes.

This whole article really resonated with me, including the challenge of having a kid who is struggling, and the nature of what they're struggling with makes it difficult-to-impossible for them to participate in treatment. This bit was very familiar from a difficult time—and by "difficult time" I mean a period of years—when one of our kids was younger:
"Some people—parents, teachers, adults with no claim to any knowledge about children whatsoever—opined, when they heard that our daughter could not go to school, that they would “just make her.” They are ignorant. They don’t know what it’s like to use force against a minor, to traumatize their own child and that child’s sister, to ignore the pleadings that a parent is hard-wired to respond to. If they knew, they would never say such a thing, or make the assumption that the parent hadn’t already tried their very best to get their child to comply. They also can’t know what it’s like to have other adults chastise them for being too soft, even as they worry deeply about being too hard, and about what these events would look like to casual observers, or on video. I can tell you what it would look like: child abuse. Because that’s what it felt like."
posted by not that girl at 6:49 AM on April 18, 2016 [14 favorites]

This is so, so good. Thanks for posting.
posted by latkes at 6:57 AM on April 18, 2016 [2 favorites]

One thing that I hate about current culture is that it is a really bad idea to talk about mental illness and/or to write about it online. The internet never forgets and for a child, the history of mental illness will stick with them until such a time that current culture comes to terms with our ability to manage it or treat it. Otherwise, it may become silently closed doors because ZOMG MENTAL ILLNESS - IT SAYS HERE ON THE INTERNET.

I'm happy that that she found relief and a way to treat her daughter.
I'm simultaneously jealous that she found relief and a way to treat her daughter.

Diagnosis and treatment of mental illness is a fluff science at best. A lot of it is "try this and see what happens, oh and by the way - here are the possible side-effects which in many ways are as bad as or worse than the disease." And then you have the good days where you can't believe that anything is actually wrong followed immediately by a surprise bad day where you wonder if you need to call the police. And when the diagnosis, such as it is, is likely several things all overlapping - yikes.

And don't talk to me about parenting techniques because I've tried them all consistently. When disregulation is in full swing, there is nothing that will reach that child. Most of the time it requires time and the patience of a saint. And sometimes a basket hold.
posted by plinth at 7:00 AM on April 18, 2016 [10 favorites]

Yeah, in a way this article is a bummer because maybe her kid does have a known and treatable disease process. There are all these kids who have extreme, extreme behaviors and no one knows the cause.

The most powerful part of this article for me was her refusal to treat her daughter's misery as a discipline problem.
posted by latkes at 7:05 AM on April 18, 2016 [7 favorites]

That was very interesting, thank you.

One thing I was not clear on is the anti-biotic course of treatment...Is she on that indefinitely now or do they stop it once the symptoms are fully stopped?
posted by If only I had a penguin... at 7:39 AM on April 18, 2016

The only way exposure and behavioral interventions (rewards, punishments) work is if the kid had the capacity to calm down. When children don't have this - the results are extremely dismal. Her parenting is fantastic, and I hope professionals learn from her case.
posted by AlexiaSky at 7:43 AM on April 18, 2016 [4 favorites]

I have to admit that this was part of my calculus regarding whether or not to have kids of my own. If I get a twinge or my wife gets a hangnail, I cringe; I can only imagine the agita involved in everyday childhood ailments, let alone something like this where both disorder and treatment are complicated.
posted by delfin at 7:45 AM on April 18, 2016 [1 favorite]

I really liked this article. It is one of those articles that takes a long time to process. There is a lot in it. I was somewhat surprised/amazed/impressed with the detail note taking and diary by the mom. I know she is a journalist, but taking notes like she did while in the throes of a crisis with a child is something I only wish I could have done. It is essential to be able to advocate for your child, yet it is not a step often taken or thought about until after the fact.
posted by AugustWest at 7:57 AM on April 18, 2016 [1 favorite]

He has never to this day taken a full history of the events surrounding her illness. Anyone reading this article already knows much more about her illness than that psychiatrist.

posted by lokta at 8:02 AM on April 18, 2016 [8 favorites]

It was the thick of rush hour, and what should have been a twenty-minute drive took three times that long. She wailed the entire way, kicking the seat back. She threw her water bottle at my head. My biggest fear was that she’d open the door and leap out into highway traffic. We had never in her nearly 10 years seen anything like this. She had never run off, never thrown a projectile. Then, as we approached the centre, she began shaking and hyperventilating. “Please, please, don’t make me go in!” We tried to reassure her, reminding her that she had actually enjoyed the previous week, but she would not be calmed. “Please! Please!” she croaked through gasps and sobs. “I promise I’ll go to sleep on my own if you just don’t make me go in! I’m sorry! I promise! I promise!”


“What will she do when you leave?” she asked me.

“She’ll be relieved.”

“What will she learn from that?”

“She’ll learn that her parents take very seriously the way she feels,” I said.

She began to lecture me about how my daughter’s behaviour is only reinforced when I give in. I stopped her again.

“No, it’s not,” I said. “Not according to my notes. I’m watching for exactly that and I’m not finding it. Her behaviour is unpredictable, it is not rational.” I argued that she is sick, and she simply cannot behave the way I want her to, or even the way she wants herself to.

“What will you tell her when you leave?” she asked.

“I’ll tell her that I’m sorry we put her through this, and we believe her that she is truly scared.”

That night, while I was drying my daughter’s hair before bed, she asked me if I really believed her fear was real. I said yes, that I really believed she’d been terrified. She said, good, because she had been. I added that I didn’t believe she had anything to be terrified of, but I still believed her feelings were real. She agreed that that was absolutely right, that there was nothing to be afraid of. But she was afraid.


Ordinary rules were suspended. She did not have to sleep alone, eat alone, brush her teeth alone, leave the house, be seen by friends, or go to school. She did not have to face her fears, old or new. There were no consequences. From that point on, we would accept that, for whatever reason, our daughter could not control her behaviour in the way she had always been able to. She should not be punished for this any more than a child who develops epilepsy should be punished for a seizure.

It flew in the face of all the professional advice we’d been given. But we were convinced that it was the right thing to do. Looking back, it is the strength it took to come to this decision, and to stick by it, that makes us most proud as parents.


This is not a "sick child". This is a child that is very cleverly -- and very astutely -- manipulating her parents.
posted by Tyrant King Porn Dragon at 8:05 AM on April 18, 2016 [1 favorite]

Tyrant King, to what end? And what makes you say this? (yes, you quoted a bunch of stuff, what about that stuff would lead you to believe the child is not genuinely afraid?)
posted by If only I had a penguin... at 8:08 AM on April 18, 2016 [11 favorites]

The mother thinks that the child's behavior is unpredictable and irrational, but the child bargains to reduce her symptoms in exchange for compliance from the parents.

It's like somebody with two broken legs saying "If you do what I want, I promise that I'll heal my left leg tonight".

I have no doubt that their child suffers -- terribly -- from anxiety. But it seems clear to me that they have sent numerous signals to their child that "if you're sick enough, you can do whatever you want" and the child has picked up on those signals, and is acting appropriately. They are being played.

Also, I look forward to the new granola-mom phenomenon of "antibiotics cure bad behavior!" that will lead to massive outbreaks of MRSA and VRSA in the near-future.
posted by Tyrant King Porn Dragon at 8:14 AM on April 18, 2016

She bargains with a fear she had before the illness. In other words, something that may not be a symptom at all. Also, you're assuming she would have been able to go to sleep alone. It's possible she said this and then wouldn't have been able to. But anyway, none of this answers "to what end"? Does any of this sound fun or enjoyable or rewarding in any way to the child?

"I have no doubt that their child suffers -- terribly -- from anxiety"

So which is it? She suffers terribly form anxiety or she's not really sick?
posted by If only I had a penguin... at 8:17 AM on April 18, 2016 [13 favorites]

A child might very well think that they could promise to heal a broken leg if they just hoped hard enough. It doesn't mean they can, it just means in the desperation of the moment they might believe they could.
posted by soren_lorensen at 8:17 AM on April 18, 2016 [10 favorites]

In your ignorance of child development, you may be unaware that children of that age independently attempt to bargain all the time -- it is a developmental phase -- whether or not this strategy is ever successful.

It's pretty amazing that you can read an entire article about a sick child and how judgments about parenting stymied attempts to get her diagnosed and treated, and come to the conclusion that people just weren't judgmental ENOUGH about their parenting!

God forbid you ever have a child with developmental or mental health challenges.
posted by Eyebrows McGee at 8:20 AM on April 18, 2016 [68 favorites]

Yeah, come to think of it, I remember as an adult pleading with doctors who didn't want to discharge me from the hospital with "I promise I won't bleed!" This does not mean that bleeding wasn't a real danger. In fact, they released me from the hospital just for a few hours on my promise to return because I was so desperate to get out, and I did bleed. The fact that I promised not to is not somehow a sign that I wasn't really bleed-y.
posted by If only I had a penguin... at 8:20 AM on April 18, 2016 [22 favorites]

If only I had a penguin...: I remember as an adult pleading with doctors who didn't want to discharge me from the hospital with "I promise I won't bleed!"

I shouldn't laugh at this, but I did. It's a wonderful image of the (in retrospect) silly things we sometimes do when we're desperate.
posted by clawsoon at 8:27 AM on April 18, 2016 [2 favorites]

The story brought tears to my eyes, but then I got curious and this page on PANDAS, from the NIH website, is fascinating:
The strep bacteria is a very ancient organism which survives in its human host by hiding from the immune system as long as possible. It does this by putting molecules on its cell wall that look nearly identical to molecules found on the child’s heart, joints, skin and brain tissues. This is called “molecular mimicry” and allows the strep bacteria to evade detection for a time. However, the molecules on the strep bacteria are eventually recognized as foreign to the body and the child’s immune system reacts to them by producing antibodies. Because of the molecular mimicry, the antibodies react not only with the strep molecules, but also with the human host molecules that were mimicked.
It's like a mass invasion of spies who mimic the local population almost perfectly. When they're found out, the security forces start to become paranoid about everyone: Heart, you might be a spy! Brain, you might be a spy! Joints, you might be a spy! Spies could be anywhere!
posted by clawsoon at 8:34 AM on April 18, 2016 [10 favorites]

Tyrant King Porn Dragon since I do not myself have children, I will not ask you if you are speaking from a place of being a parent. However, I am curious as to whether you were ever once a child. Because man, that's cold. When you are sick, you desperately want people to understand that you don't feel well, and the thought that they won't believe you is terrifying.
posted by instead of three wishes at 8:36 AM on April 18, 2016 [17 favorites]

Tyrant King Porn Dragon: Also, I look forward to the new granola-mom phenomenon of "antibiotics cure bad behavior!" that will lead to massive outbreaks of MRSA and VRSA in the near-future.

You might enjoy this advice from the NIH page I linked to above:
To avoid future episodes of PANDAS, it may be helpful to use antibiotics as prophylaxis (prevention) against strep infections. Prophylactic antibiotics have proven to be quite beneficial to patients with rheumatic fever and Sydenham chorea.
posted by clawsoon at 8:48 AM on April 18, 2016 [3 favorites]

This reminds me of the 100 visits I made to the doctor as a teen for breathing problems only to be told I was having panic attacks. I kept saying I wasn't. Turned out I'm allergic/sensitive to a perfume that was common at the time. It eventually got bad enough that it became obvious. And luckily it was a cheap teen perfume that fell out of favor. I wanted to go back and give every condescending doctor in that stupid patient-mill practice a good wedgie.
posted by fshgrl at 8:48 AM on April 18, 2016 [9 favorites]

I was incredibly sick as a child. Visibly, diagnosably, incontrovertibly, chronically sick for many years. People (including my parents and teachers) thought I was faking it, at least some of the time. Thankfully, to my knowledge, my doctors didn't, but then again, they could see it. They could not cure it, only manage it (treatment has advanced significantly since the 70s). Despite frequent jaunts to the ER in the middle of the night or the middle of the school day, I was told to stop faking it if my illness happened to flare at an inconvenient time for my parents or say, right before a test. Even if my lips and nails were turning blue at the time.

I can't tell you how profoundly this has affected me throughout my life. Not wanting to be a drama queen, not wanting attention to be on me at any time, making sure that I can "prove" anything I am trying to report. I cannot imagine being a parent who wholeheartedly believes their child and cannot get a doctor to listen.
posted by Sophie1 at 8:58 AM on April 18, 2016 [16 favorites]

Two of the leading causes for the development of antibiotic resistant bacteria are, according to the NIH, incomplete diagnosis on the part of physicians who see that a patient is sick and prescribe a wide-spectrum antibiotic rather than a specific one, and critically ill patients who have such poor immune systems that they need heavy duty antibiotics. These things, in their own words, happen more often than prescription of antibiotics for mild ailments of viruses. Further, according to the NIH, more than half of the antibiotics produced in the US are used in meat production. Link is here.

TKPD - if the child was manipulating the parents why did her behavior change when she received antibiotics? If you read the whole article, you will read that the child was biting and kicking the parents and then running into traffic. After the antibiotics, the child was willing to accept a plan that got her back in school. What 9-year-old would manipulate her parents with the sole goal of getting antibiotics?

I could say more, but I feel sorry for you if you what you wrote were your real feelings on the subject. Sooner or later life is going to kick you in the face, maybe it already has, and I feel bad that someone is going to offer you the same staggering and ignorant lack of empathy that you offered these parents.
posted by Slothrop at 9:07 AM on April 18, 2016 [17 favorites]

I have a friend whose child was diagnosed with PANDAS years ago. She was a single mom at the time and had to go through absolute hell trying to get anyone (doctors, school admins, her employer) to listen to her when she said "he went from his normal quirky-but-chill self to completely flipping out for literally no reason seemingly overnight."

Her insistence that something was really wrong with him was ignored for weeks. She was told he was making it up for attention and she was shouldn't take him seriously because it was babying him. He was choosing to act up and she was choosing not to do the hard work on his behavior. Because she was just an overwhelmed single mom. She said she could see the judgment in people's faces--all patience and sympathy until they heard there was no dad in the picture, then Oh! that's the reason! Mom's fault!

By the time she heard about PANDAS and did some research, her partner track legal career was over and her poor kid thought he was "bad".
posted by chaoticgood at 9:25 AM on April 18, 2016 [11 favorites]

I coach a lot of kids sports and it's kind of disturbing to me that professionals cannot tell the difference between a "bad" kid, a kid who's having a bad day and one that is wracked with anxiety. I mean, it's pretty damn obvious if you take a deep breath and a step back 99% of the time. I'm sure there are baby criminal masterminds out there who want nothing more than to Silence of the Lambs all the adults around them but there can't be many, I've never met one. There are definitely kids that are just kind of a pita or that are bullys or enjoy fighting and conflict and some kids that you can tell have personality disorder/ mental health issues but they're kids, they're terrible at lying and hiding their motivations and they don't know enough to do so effectively most of the time. It's pretty easy to suss what they're up to and when they're genuinely scared. Why are most adults so sure so many kids are these master manipulators?
posted by fshgrl at 9:35 AM on April 18, 2016 [10 favorites]

Probably because it's easier to believe that than it is to believe that behaviour can be so very biological and thus, uncontrollable. A manipulator can be reasoned with, cajoled, punished, coerced. Someone who's sick, especially a sick child, can't be.
posted by feckless fecal fear mongering at 9:40 AM on April 18, 2016 [6 favorites]

(Let's skip the TKPD comment derail, shall we?)

This bit really caught my eye, about easing her daughter's transition back to school:

"She was lucky she was such a well-loved student, and we were lucky that the school felt so committed to her."

And I'd bet that the teachers, the school as a whole, making an effort to ease her back into the system, reduced her emotional recovery time by several months.

Kids with special or complex needs who present well, who are well-liked by their teachers and peers (like mine, so I do speak from some first hand experience), who have strong advocates - I think (I know) they have a much easier time getting the support they need. I worry about other kids with similarly complex needs and circumstances who will never get the benefit of that kind of support. When they don't have a science journalist parent to advocate for them, what happens to those kids?
posted by RedOrGreen at 9:46 AM on April 18, 2016 [17 favorites]

taking notes like she did while in the throes of a crisis with a child is something I only wish I could have done

Maybe it's because I'm a scientist and so I guess it comes naturally to me, but god yes you have to do this. It's been discussed in other threads about chronic illness, but our (USA for me) medical system is staggeringly bad at sorting out complex chronic issues.

I can't even begin to count the number of medical professionals who told me last year that yeah, putting your kid-recovering-from-a-cold to bed fine and having them wake up in severe respiratory distress needing to be rushed to the ER and admitted to the PICU THREE TIMES IN TWO MONTHS is just "a thing that happens".

No, actually, no, it is not. The mystery was eventually solved with the expertise of a couple of doctors to whom I am deeply grateful, but only because of the pages of notes and articles and medical histories I took and because I grilled every respiratory therapist who came into her hospital room to treat her: What lung sounds do you hear before the treatment? What lung sounds do you hear after the treatment? And I argued with doctor after doctor who told me that albuterol has no side effects. "The respiratory therapist said she went from clear bilateral breath sounds before to wheezing after. That seems like something we should probably look into." "Yes, there can be an increase in wheezing when you open up areas of lung that were blocked off." "YOU AREN'T LISTENING. I SAID CLEAR BILATERAL BREATH SOUNDS. I ASKED SPECIFICALLY." "Well, albuterol doesn't cause wheezing. They must be wrong." So again and again, I talk to the respiratory therapist. What do you hear this time? Do you hear breath sounds before? How do they sound different after? Guys, something really weird is going on here and I think it's important.

Well, a bronchoscopy, a metric fuck-ton of pubMed reading, and god knows how many hours of brain-bashing against it later, I found publications reporting that in patients with structural defects in the trachea and bronchus, albuterol can cause large airway collapse, which creates a wheezing sound that is slightly different but similar to regular wheezing. The thing is, none of the people who saw her had the time or bandwidth to do that kind of research. Nor did they notice the albuterol making her worse. It was an offhand comment by one of the respiratory therapists that initially clued me in and the more I pursued it the more it seemed like there was probably something there.

You know what they do when you show up at the ER with a floppy wheezing baby whose respiratory rate is 2-3 times what it should be? They put 'em on continuous albuterol until they either get better (vast majority of kids) or decompensate completely and get sent up to the ICU. Where they remain on continuous/high frequency albuterol delivered with super high flow forced oxygen to get it into their lungs. Which, fortuitously, also props open collapsed large airways. So it rescues from further decompensation but it's really really hard to wean off of if you're still firehosing the albuterol. But that inability to wean just makes it look like the kid needs... more albuterol.

So now we have letters on file at the ER and the doctor's office and in my purse and taped to the fridge and with every caregiver and memorized in my head that say something to the effect of SPECIAL SNOWFLAKE DO NOT ADMINISTER STANDARD TREATMENT, and even then the official pediatrician approved plan is "monitor oxygen levels at home and avoid ER except as absolute last resort."

It's not that (the vast majority of) doctors don't care, but there really isn't the time or freedom, or (in the hospital) continuity between shift changes and clinical service rotations for them to sort out the edge cases where things really really should behave a certain way and just..... don't. And so, like Eyebrows says above, you have to keep relitigating the same basic things over and over with a string of people who are inclined to dismiss you because it just doesn't fit with how things are supposed to work.

If you're lucky, you finally find a person who believes you that you are generally well informed and that you have a significant amount of valid data that they need to incorporate into their analysis. And that's when you can solve your mystery.
I can't even think about how many more hospitalizations there would have been if we hadn't.
posted by telepanda at 9:51 AM on April 18, 2016 [36 favorites]

I understand where people are coming from with their patient perspectives but I think it is pretty uncharitable to chastise physicians for forcing patients to endure going through checklists repeatedly. Each and every one of those doctors carries a serious personal responsibility for checking all of those things and an oversight would probably constitute a form of malpractice. It's annoying but it is also a form of redundant security in depth for missed diagnosis that could potentially slip through. You really do not want responsibility to diffuse to group in a health crisis.

I once had a mono infection slip past about 4 doctors ( in a university clinic where it is probably the top infectious disease they see!). They didn't have a good checklist - they did a strep test and then followed up by doing nothing in the absence of strep. I was only diagnosed once my throat infection became so severe it was 'clinically interesting' and required blasting with heavy duty mind altering steroids in order for me to be able to breathe and swallow. A whole slew of doctors just assumed somebody else either already had done something or would do something.
posted by srboisvert at 10:57 AM on April 18, 2016 [3 favorites]

srboisvert, then the answer is for doctors to have a better bedside manner. "I see from your previous histories/charts/whatever, that x, y, and z haven't applied. Has that changed?"

Because it's infuriating to feel like you're repeating yourself over and over and over. Just a very basic, very human, "I see we have this information, let's talk about any updates or changes," would go a long, long way.
posted by cooker girl at 11:20 AM on April 18, 2016 [4 favorites]

I agree with srboisvert and definitely found myself having such thoughts while reading the article. For every legitimately great parent like the author who is doing exactly what they should be and accurately reporting it, there are parents who will report that their kid doesn't drink soda, and later say they drink Coke with dinner. There are parents who say bedtime is 8 PM, and later say that they know that bedtime should be 8 PM but most of the time the kid doesn't get to bed until after 10.

People are generally not great historians -- becoming decent at doing it about patients is something we train at for years and years -- and repeated questioning in multiple ways isn't about a lack of trust for the patient (or guardian), but about trying to get the best and complete information about the situation, often by providing varied prompts. If you asked me right now what I've had to eat today I'd probably say I had oatmeal for breakfast, but if you asked me again to list everything I've taken by mouth today I might remember and volunteer that I had an upset stomach and ate some Saltines at 3 AM.

That said, the takeaway for me is that I really doubt that the author (or people sharing their stories in this thread) would fixate on repeating themselves to such a degree if they received adequate care in the end. Repeating yourself only to feel that you didn't get anything out of the encounter, or that you were made to repeat yourself on one topic but the physician never took your complete history, is a poor experience, full stop, and that's really unfortunately what happened over and over to the author and her child.
posted by telegraph at 11:26 AM on April 18, 2016 [10 favorites]

Stories like this are infuriating. Of course doctors are human and they don't know everything. But there is a terrible culture of doctors not being willing to admit they don't know everything. They know everything and patients know less than nothing. "Doctor Google". "It's impossible that I don't already know what this so the patient must be doing existence wrong." is such a sickeningly common story.

Actually asking the right questions to tease out the information you need is fine. Not bothering to ask and stopping at "You should lose weight & stop doing all that stuff you're not doing & stop complaining & try existing better" as diagnosis until the patient has just brute forced their way into your attention, is wrong.
posted by bleep at 11:38 AM on April 18, 2016 [7 favorites]

srboisvert, then the answer is for doctors to have a better bedside manner. "I see from your previous histories/charts/whatever, that x, y, and z haven't applied. Has that changed?"

Oh my shitting hell. I just had surgery a few weeks ago, and have to go in for another (unrelated but showed up in diagnosis for the first) procedure soon, and of the ~20 or so actual doctors and nurses I have interacted with, literally the only one who showed that they had actually read my chart past "ACDF surgery" was my freakin anaesthesiologist, about twenty minutes before surgery. It is maddening. While I understand that as you get handed off from one person to another they need to verify that they've got the right patient, so there's some repetition, there's stuff in my chart that is like "why the hell don't you know this."

(Shoutout, though, to the OR nurse. He came to me in pre-op, stayed with me through the operation, kept being reassuring while I was laying on the table pre-sleepytime-drugs, kept touching my shoulder to reassure me. ASTOUNDING bedside manner, best I've ever experienced. AND showed up to the recovery room to see if I was awake yet!)
posted by feckless fecal fear mongering at 11:39 AM on April 18, 2016 [5 favorites]

"I understand where people are coming from with their patient perspectives but I think it is pretty uncharitable to chastise physicians for forcing patients to endure going through checklists repeatedly. "

I don't have a problem with the checklists -- my problem is the doctors who launch into telling me how to fix problems X, Y, and Z without first ascertaining whether X, Y, and Z are actually my problems. They may apply to 90% of situations like mine, and I understand that a lot of primary care (for pediatricians as well as GPs) is very routine, 90% cases, but at a certain point when a patient keeps saying "Okay but we've already tried that and it didn't help," you have to start listening.

It took more than three years of my husband and I -- well educated professionals with access to good doctors -- to get a clinician to take us seriously that there was something not right with our child's development. Our pediatrician believed us, and would refer us, and the specialists in child development, psychiatry, etc., kept telling us to put him to bed earlier and limit caffeine. (To a three year old. I'm not a perfect parent but I'm not caffeinating my three year old because I'm not a MORON, I do not WANT to be up at 3 a.m. with a wired child.) Even once we got Early Intervention involved, the medical side of the child development world kept brushing us off and saying "just a phase, just a phase, just a phase." We had ridiculous problems with potty training, because of what turned out to be a physical issue, and they just kept telling me I wasn't consistent enough with my potty training. I SPENT TWO SOLID YEARS CLEANING UP NON-STOP PEE BECAUSE I FOLLOWED EXPERT ADVICE that kept telling me of course it wasn't a physical problem, allowing him to use pull-ups would delay potty training, and it was that I was a bad parent who couldn't follow simple instructions. (My child without the physical problem? I trained in two weeks.) Nobody wanted to hear what I had already tried, they just kept giving me the same three books and telling me to "give it six weeks." When I followed up after six diligent weeks, I'd get brushed off.

When we finally, finally got traction, and we sat in a meeting with six developmental pediatricians and assorted OTs and speech-language pathologists and so on, the senior doctor said to me, "I don't know how you dealt with this on your own for five years with no outside support." Well, basically I had not been away from my child for more than four consecutive hours in five years, my depression was off-the-charts because of the demands of caring for a special needs child with zero support, and I had spent three solid years at that point trying to get someone -- ANYONE -- to listen to me and help me. And the answer was always -- always -- that it was Normal Problem #22 and the problem was that I was an inadequately consistent parent. One of the doctors told me that, ironically, if I'd been a worse parent he probably would have gotten help a lot earlier, because he would have spiralled out of control, but because I WAS so consistent and applied so many parenting best practices and I was so diligent and calm and patient with his developmental issues, we had created a world where he could largely succeed and it masked the seriousness of some of the problems. (Which was both reassuring to hear and kinda sucky.)

It's not the repeating. It's that no matter how often I repeated myself, I got told by half-attentive doctors that it was "just normal" and I was worried about nothing and he would outgrow it and I needed to be more consistent. I know they didn't believe my self-reports about bedtime and caffeine and sugar and diet. I'd say "We don't give him any caffeine" and they'd say "Well, give him less." I know they considered me a hysterical hover-mother because one of the child psychiatrists we saw flatly told me so, and that I was damaging my child by seeking help for him. When we finally got doctors to pay attention, my attention to detail was praised as extremely helpful. But before anybody admitted there was something wrong, I was a hysterical hover-mother doing everything short of Munchausen's-by-proxy.

Not only was that three years of increasingly desperate attempts to get someone to hear me that there was a problem, that was three years of therapeutic time lost, which matters a lot in the life of a young child. So you can understand my rage not at the checklists, but at the total lack of followup on checklists and at the assumptions made about my problems. I mean, honestly, after three years of non-stop attempts to get someone to actually examine my actual child, rather than just give me advice for a hypothetical preschooler who wasn't mine, someone at some point should have either LISTENED to me, or gotten ME into therapy. It should not have taken three years.
posted by Eyebrows McGee at 12:00 PM on April 18, 2016 [45 favorites]

There's no question being a parent to a child with anxiety like this must be unbelievable distressing.

However, there's a lot in this story that is odd. The child began having anxiety symptoms in mid-December. While most of the article describes these episodes in detail (while reading the article, I thought this lasted for at least half a year), the child was put on antibiotics in February. So over the course of only 2 or 3 months, the parents jumped from typical medical therapies (including rejecting SSRIs, the first-line medication for anxiety) to believing this must be PANDAS. The mother then says that while she began seeing improvements shortly after giving her child antibiotics, the child wasn't ready to return to school until September.

Again, I sincerely believe those 3 months were awful for the parent, but it seems way too hasty to write an article criticizing the medical establishment for not finding the "right" treatment for her daughter. Mental illness do not typically resolve quickly nor do they respond to therapy (both medical and non-medical) immediately. We do not understand diseases like depression or anxiety like coronary artery disease, asthma, or strep throat. It seems far more likely this is a child who had anxiety which, like many other mental illnesses, required several months to resolve.

Furthermore, there is no evidence currently that shows streptococcal infections cause any mental illness. This not to say syndromes like PANDAS don't exist. However, when the only evidence for its existence is anecdotes and theories, it is inappropriate to say "this is the diagnosis" or say "this is the treatment for this syndrome." I'd also argue that it's inappropriate to put your child on antibiotics for several months for these reasons, but I suppose that is the parent's decision.
posted by bittermensch at 12:24 PM on April 18, 2016 [1 favorite]

However, when the only evidence for its existence is anecdotes and theories,

A. Do you have a citation on this?

B. You appear not to know what the word theory means in the context of science.

C. Here are many peer-reviewed articles on PANDAS, which is why I'll be curious to see your citation on their not being an evidence. Of course peer-reviewed articles don't mean there's no controversy about the existence of something, but they certainly make it hard to argue "there's no evidence beyond anecdotes and theory."
posted by If only I had a penguin... at 12:42 PM on April 18, 2016 [2 favorites]

For the record, I'm even saying PANDAS exists or that this girl had it. If it does exist, it does seem like a likely candidate for what was wrong with her. But it is still possible she had something else that was treatable with antibiotics. It's possible that she had something else that went away on its own and the timing was a coincidence. But the "there's no evidence that this exists" seems to be an ill fit with reality.
posted by If only I had a penguin... at 12:46 PM on April 18, 2016

I'm kind of jealous of this family. They went through a really tough period and faced some doctors who didn't listen very well, but they ended up with a fairly simple treatable medical issue. Most parents of kids with mental illnesses don't get to that point.

PANDAS was actually a suggestion we got from our first therapist. It wasn't actually a possibility in our case, and the therapist would have known that if she had listened to and believed the history we gave her, but if the author had gone to a different provider, she might have gotten that suggestion right off the bat. So that's a bit of hope for others in her situation. The next psychiatrist we saw literally rolled his eyes when PANDAS came up, so not too much hope, I guess.

But that's the problem. Every provider I've seen up until our current psychiatrist and therapist has had very definite pet theories that they jump to, whether they really fit or not. PANDAS, diet, communication skills, autism, childhood trauma, ADHD, and of course, bad parenting. None of them would have made sense to someone who paid any attention to what we were telling them, but to get past that takes a 2-3 month waiting period for an appointment (in the U.S. at least - and with insurance - good luck without it), several appointments of repeating the same history to little or now effect, an effort for a few weeks to try whatever theory this guy thinks will work even though it doesn't really seem to fit, followed by an eventual conclusion by us or by the provider themselves, that it truly doesn't fit and that they don't know how to help. And then starting over with the next provider.

Our newest group is attempting to meet our child where he is, rather than trying to fit him into a pre-defined box. It still takes throwing stuff at the wall to see what sticks, because the science just isn't there yet - especially with children, but it's really nice to know that when one thing doesn't work, they're not assuming that we just haven't bought in to the program or that we're lying to them. I still have moments of frustration when I'm trying to describe a bad episode and I can tell that they don't understand just how truly bad it was, but it's better than anyone we've dealt with up till now.

I agree with the author's conclusion. When the condition gets better, you assume that whatever treatment you were following fixed it. But you don't really know. Because nobody really understands what is going on in the brain of a sick kid. Parents aren't always reliable witnesses about their own children or their own parenting flaws, but when their stories don't match doctors' theories, the stories aren't necessarily wrong. Parents struggling to handle sick kids are even more likely to screw up from time to time than parents of healthy kids (who are 100% certain to screw up occasionally), but that doesn't mean there isn't something else going on. Doctors can make more educated guesses about what's happening, but it's all guesswork with kids - healthy or not. But especially not.
posted by Dojie at 12:46 PM on April 18, 2016 [1 favorite]

including rejecting SSRIs, the first-line medication for anxiety

From TFA: "And so we came away with a prescription for option three: Prozac. To be fair, that had been the doctor’s first choice all along. He honoured our wishes to try the other two first. Her dad and I both knew a lot about SSRIs; I’d written about them for years, and he was taking them. The drug could take a while to kick in, have turbulent effects in the first two weeks and was known to worsen tics. Most worryingly, it had uncertain effects on a developing brain, and, if it worked, she’d likely be using it for the long term. We were also painfully aware that this was the last real trick the psychiatrist had up his sleeve."

All valid reasons to "reject" a medication for yourself, let alone for your child.

The mother then says that while she began seeing improvements shortly after giving her child antibiotics, the child wasn't ready to return to school until September.

Paraphrased from TFA: The girl was able to participate in family life about two weeks after she started the antibiotics, including her sister's birthday party and her own. That is HUGE for anyone with anxiety. I can't even imagine how amazing it must have been for this particular child with this particular, extreme anxiety. Also, she started going back to school in small doses (after classes, on the weekends) in March. So, while she wasn't able to go back full time until September, she was making progress since March.

The Monday-morning quarterbacking of the way parents, particularly mothers, choose to deal with serious issues just enrages me. I've been that parent, the one who gets the looks, the one who everyone gives advice to (because yeah, we never thought of that, haha, good one), the one who cries every single damned day because she feels like she's failing her child even though she's doing everything she fucking can. On behalf of all the parents who have felt those feelings, thanks but no thanks for your opinion.

but I suppose that is the parent's decision.

Yes. Yes it is.
posted by cooker girl at 12:47 PM on April 18, 2016 [22 favorites]

bittermensch: Furthermore, there is no evidence currently that shows streptococcal infections cause any mental illness.

Sydenham's chorea is a well-established (first reported in 1802) rare side-effect of streptococcal infection which can lead to "abnormal behavioral or emotional problems including obsessive-compulsive disorder, attention deficit and hyperactivity, cognitive issues, irritability, confusion, and excessive emotional reactions and frequent mood changes (emotional lability) such as uncontrollable crying or laughing at inappropriate times."

The hypothesis is more-or-less that PANDAS is Sydenham's chorea without the chorea (involuntary muscle movements).
posted by clawsoon at 1:02 PM on April 18, 2016 [1 favorite]

There is no citation I can provide saying "PANDAS does not exist" since the absence of evidence does not rule out it's existence. The only papers I have read that support PANDAS's existence are case reports, which is very weak evidence.

Again, I am not saying PANDAS is a fake disease. I would love to read a paper that shows PANDAS is real. This exists for Sydenham's chorea -- we have proof of its effects on the basal ganglia.

The point of my comment was not to discredit PANDAS. It was to explain that it's inappropriate (with the current medical literature) to say "your diagnosis is PANDAS, this is the prognosis, this is the treatment." I found the article to be too hasty in making this statement.
posted by bittermensch at 1:13 PM on April 18, 2016 [2 favorites]

I was responding to the bit I quoted - it is well-established that streptococcal infection can lead to temporary mental illness. The uncertainty is whether it can lead to mental illness without also leading to chorea.

From what I'm reading so far (and, yes, I'm at the "read-some-pages-from-Google" point), Sydenham's chorea is much more common in the developing world. So if PANDAS is a real thing, and is related, there'd be more statistical power in a study done in the developing world. That seems unlikely to be done, though.
posted by clawsoon at 1:26 PM on April 18, 2016

Here's a book chapter on PANDAS - free fulltext, even. Lots more on PubMed.

bittermensch the weight of evidence for PANDAS being a real phenomenon extends far beyond "just case studies."
posted by porpoise at 2:13 PM on April 18, 2016

Ms Wimp's childhood friend's daughter has had an analogous experience with the health care system here in the US. I feel for the author's feelings of helplessness and anguish over a child whose behavior has become baffling and intractable. Those of us who have raised children know how deeply the tie to them goes into your chest. Every fear is a stab, every sign of distress an anginal twinge. I was so relieved that her daughter's symptoms abated. I wish I could say the same for my wife's dear friend's daughter. She still is struggling without an end in sight.

That's not to say that I agree with the author's near-diagnosis of PANDAS, but I was impressed with her well articulated skepticism about her own perception of the antibiotics being a cure. I fully expected to read a full-throated endorsement, but instead read:
I do not know whether the antibiotics had a hand in her recovery. Certainly, her turnaround coincided with taking them, but there was nothing lock-step about her improvement. Temporarily stopping the medicine did not bring disaster, and taking it did not instantly restore her former self. There were no blood tests or throat swabs to confirm anything; no one would do them.
posted by Mental Wimp at 2:14 PM on April 18, 2016 [4 favorites]

porpoise: Here's a book chapter on PANDAS - free fulltext, even.

To be fair to bittermensch, though, that chapter has a section that starts, "The main difficulty in demonstrating the concept of PANDAS..." and goes on to talk about about the mix of small longitudinal studies that are suggestive but not definitive and big cross-sectional studies that are also suggestive but not definitive. What's needed is the best of both - big, and longitudinal - and it sounds like we're maybe not ready for that yet.

The chapter hints that, ironically, it might be the fact that we have an effective treatment that will make proving the connection difficult. If a kid in a big longitudinal study gets sick with an acute streptococcal infection, it's questionable to not to give them antibiotics, and studies where doctors were free to give antibiotics have given unclear results. Sydenham chorea may have been easier to demonstrate because doctors in the 1800s had no options for treatment and could only observe the course of the disease. (There was also the fact that England at the time was similar in some ways to a developing country today, so they had a higher number of cases to observe.)
posted by clawsoon at 3:15 PM on April 18, 2016

My first child refused to eat. Just plain refused, wouldn't do it, she was practically exclusively breastfed when she was over a year old. When she finally did start eating, it was in minute amounts and a very constrained diet; the doctors alternately told me "don't cater to her, no child will intentionally starve themselves" and "OMG this child has crossed two percentile lines for weight-for-age, you have to get more calories into her immediately!" She was bloated, her hair was falling out, she had terrible mouth sores and crippling constipation, severe abdominal pain, and no energy. Plus truly horrifying temper tantrums. At the age of six and a half, she weighed 39 pounds and came in at the 0.83rd percentile for BMI-for-age.

All of this was, implicitly or explicitly, presumed to be my fault. I kept exhaustive food diaries -- how much were we offering her, how much was she eating. I got lectured over and over about the need to feed her plenty of fruits and vegetables instead of just junk food, despite the fact that she wouldn't eat EITHER. She was diagnosed "failure to thrive" and our doctor made a point of telling me that this diagnosis is "almost always nutritional and is usually parental," aka it happens when parents don't feed their children enough. I was told to just "make her eat" more fruits and vegetables, to keep putting them in front of her and not let her leave the table until she had eaten them, even after I told them that we were at the table for two, four, five hours and more without her eating them and that I didn't feel comfortable physically restraining my child to keep her in her chair. I was told that her ridiculous constipation was all about control, that she was physically refusing to poop to spite me and that I was making it worse by worrying about it.

When things changed was when she got so badly constipated that she actually threw up poop, something I did not know was physically possible until it happened in front of me. I got her into the doctor and said "This is not normal, this is not stubbornness" and they did an X-ray which showed that she was backed up to the bottom of her esophagus. Stunned, they referred me to Seattle Children's Hospital, where they initially wanted me to take the class that all parents who come in with chronic constipation have to take that says "don't just feed your children potato chips and diet Coke;" we only got out of that because our family practice radiologist asserted that contrary to my MD's reading of the X-ray, my child was not constipated after all. (The GI we saw at Children's took one look at the X-ray and said "the only thing more full of sh*t than your daughter is that radiologist.")

After about three months of investigation and a slew of negative tests, she finally tested positive for fructose malabsorption disorder. In FM, fructose isn't absorbed through the intestine, and instead remains behind and causes irritation and horrifying bacterial overgrowth. The only treatment is an insanely restricted diet which includes almost no fruits and vegetables, at least for the initial phase. That's right -- turns out that all the "good healthy fruits and veggies" I was supposed to "force" her to eat were what was making her sick.

Three years into this diagnosis, my daughter is a tall, strong, muscular powerhouse of a girl with a sunny disposition and extraordinary energy levels. She sings in an elite choir and is on her elementary school track team, and wants to try out for our regional swim team. She lives off of chicken strips and tater tots, ramen noodles and salami, potato chips and diet Coke, and according to our (new) pediatrician is one of the healthiest children in his practice. I want to cry when I think about the hours I spent trying to hold firm against her supposed "manipulations," trying to "make her eat."
posted by KathrynT at 4:57 PM on April 18, 2016 [31 favorites]

KathrynT: "no child will intentionally starve themselves"

I've been told that multiple times by doctors, too. Hah! It's almost like they've never seen a child screaming and melting down for an hour because they're so hungry but don't want to eat. Or then watched them lose pound after pound after pound.

(What a horrific story. Glad to know it worked out for you and your daughter in the end.)
posted by clawsoon at 5:10 PM on April 18, 2016 [1 favorite]

Hmm. The hero-parent narrative that runs through this and most other stories of distressed children bugs me a little. It gives a somewhat skewed perspective, because we only get we only get the child's voice filtered through her mother, which inevitably corroborates the author's account. But what was the kid's inner life really like during and before the problems? We don't really know. Instead, we get a thorough description of symptoms, what the kid told her parents, and how antibiotics appeared to improve things. It all reinforces the interpretation that it was some mysterious yet hard to prove illness. And, perhaps it was.

But observer bias is a real thing, and I have to wonder if the situation was quite as it appeared. The kid's experience sounds too much like my own to rule out the possibility that her problems weren't primarily psychosocial. At least for me, school — and adolescence in general really, involved so much coercion and powerlessness, and I was given so little voice and understanding, that I eventually collapsed in a kind of involuntary psycho-somatic rebellion. If my parents had written an article about my distress and the experience of going through the psychiatric wringer during that time, I think it would've come out similarly.
posted by Wemmick at 5:47 PM on April 18, 2016 [3 favorites]

Observer bias is definitely a thing, but no other observer was paying attention to this kid's problems at the necessary level of detail and that's the heart of the problem. The parents had a great deal of difficulty finding anyone who would listen and observe in enough detail to actually help their kid. It's not that they were unwilling to accept alternate hypotheses, it's that they were routinely being blown off and told, "that's not how it works and you need to try harder". Which is an unbelievably gaslighty thing to hear, as evidenced by KathrynT's and Eyebrows McGee's and my and other stories in this thread.

(OMG the food thing. Having a child who will not eat enough to stay alive and healthy is its own separate circle of hell. Let us just say that, no, you can not force a child to eat. Anyone who says otherwise has not lived with such a child. Having watched my particular child transition to appropriate food consumption after $interventions, I am wholly confident that it was not a parenting problem. It is staggeringly easy to feed a child who actually eats food.*)

*in comparison. YMMV. No judgment implied.
posted by telepanda at 7:34 PM on April 18, 2016 [4 favorites]

I'd heard of PANDAS in passing on various mom-FB-groups (mostly of the "I healed my child of autism/speech delay/everything with fish oil gummies; you can too!" persuasion). Had never really put much thought into it. But last week we finally got my three-year-old in to a specialist clinic for a cognitive/behavioral assessment, and we were talking with the psychologist about how he'd developed some tics after a viral infection last fall. And then I started thinking about how much more difficult he'd become this winter ... she didn't out and out say "PANDAS", but she wanted to know if his behavior improved after a round of antibiotics, all the details of the virus and the winter and everything. We have a follow-up appointment in a month or so, and I'll be interested to talk more with her about it all.
posted by bluebelle at 7:43 PM on April 18, 2016 [3 favorites]

A friend had forwarded this article to me last month since I was dealing with my own medical mystery, it really captured a lot of the experience. My son had a bad stomach flu in January, and it lasted over a week. Typically these last 2-3 days max. So a week of high fever and diarrhea, then he started getting better. But every day school would call me to come get him because he was crying and clutching at his stomach in class. He'd spend hours in the bathroom. He'd spend 20 minutes in the bathroom, return to class for 5 minutes and then run to the bathroom again. He's had good weeks and bad weeks but the stomach pains have been a constant. We went to the pediatrician, we had an x-ray to check for blockages. We gave him enemas (at the pediatrician's request). We gave him stool softeners. We played with his diet. Finally last week we had an ultrasound, and the technician found that his intestines were completely full of enlarged lymph nodes. Supposedly the flu was bad enough to make these lymph nodes swell up, and they didn't go back down, therefore causing pain whenever he has any stool in his bowels. And there's no cure, he just needs to grow out of it. 3 months of tearing my hair out wondering how to help my 6 year old, and in the end, I can't help him at all.

We went through the anxiety crisis with my daughter when she was in the first grade. One day she was a happy girl, the next she was convinced that everything was going to kill her. She would scream all day that she was dying, she wouldn't eat because she was afraid the food would choke her. It's really frustrating how long it took to get treatment for her in this case, a psychiatrist took pity on me and had her come in through the ER on the morning he was on shift so he could quickly get her into the system. Once she was on Prozac it took about 2 weeks and she was again back to her normal happy self. It's been a few years since, we'd have a few little adjustments to make when she'd go through a growth spurt and need a higher dose, but mostly this has kept her even. Still, I absolutely remember the terror she felt and no, it was definitely not a discipline problem and I think if ANYONE had tried to infer that it was I would have lost my SHIT.
posted by Hazelsmrf at 8:29 PM on April 18, 2016 [3 favorites]

I'm a scientist with a PhD, but in physics rather than medicine. And I've got two kids with (easily diagnosed! Comparitively well understood!) rare genetic disease. But my experience of dealing with doctors has also been so frustrating. And I have a TON of respect for medical science, for evidence based medicine, for expertise and credentials, for "if you hear hoofbeats, think 'horse' not zebra."

But I'm pretty sick of being talked down to. No, I don't have an MD. Yes, I'm a worried mom. But I'm not an idiot, and I've invested a hell of a lot more time and mental energy in these particular cases than any doctor. I may ask stupid questions sometimes (especially in the beginning) but I am capable of understanding the answers. It would be quicker to give them to me than laugh me off, because I'm not gonna frickin' drop the subject. And if you're telling me stuff that conflicts with the evidence as I've observed and documented it? Well, I'm sorry but I'm gonna have go to with "my lyin' eyes."

And you know, I get that patients WANT their doctors to sound confident, that "I don't know," is not socially (or legally) acceptable in your profession... But I know enough about medicine to know it's not frickin' physics (hell, even physics doesn't live up to its own reputation for deterministic results, in the lab). If you don't know, you can tell me. I will not think less of you, and I won't sue. But I will expect you to help me brainstorm, to refer me to some papers that might have references I can chase down (if you don't have time to do it yourself), to refer me to another doctor who might have some ideas, (if you don't have time to consult with them)... I consider this kind of thing the minimum amount of effort for "doing your job" as a doctor.

And my job as a parent is to make sure the doctors do their job. And if they are not, to find another doctor. I consider having a license to practice medicine to be a necessary but not sufficient condition for being able to treat my kids. And I get that some parents and patients go doctor shopping, looking for someone willing to confirm their self diagnosis and prescribe their desired treatment, not willing to be satisfied until they find a doctor who will tell them what they want to hear. Believe me, I constantly worry about whether I am turning into that parent. But there are also many more parents and patients who are genuinely experts on their own cases, who are just looking for a doctor willing to adapt their theiries to the facts of this particular case. So before you accuse the parents of doctor-shopping, ask yourself if you have really done your due diligence in considering all of the evidence they're bringing you, in an unbiased light. Ask yourself if what you're tlling them really makes sense in the context of what they're telling you. And remember that no one who is unwilling to consider the possibility that they might be wrong is actually doing science. Holding your theories lightly and being willing to entertain alternate hypotheses is a fundamental part of what science is. Even in medicine. Especially in medicine.
posted by OnceUponATime at 4:44 AM on April 19, 2016 [10 favorites]

Holding your theories lightly and being willing to entertain alternate hypotheses is a fundamental part of what science is. Even in medicine. Especially in medicine.
OH MY GOD YES. We have bent over backwards trying to avoid having to see one specific specialist ever again because he was completely dismissive of every hypothesis except his own pet hypothesis, swore that it was impossible for my kid to have a trachea problem (and even if she did it was totally irrelevant to her repeated emergencies). He overrode and reversed the treatment plan his partner had put in place when they switched off clinical service a few days into the last hospitalization. And when he discharged us from the hospital, he told me straight up that his partner's hypothesis was wrong, she was still learning, and he needed to have a word with her and explain how these things work. (NB: Partner is in no way a junior physician.) I elected not to punch him in the face, but it was definitely on the list of possible options.

GUESS WHICH DOCTOR WAS RIGHT, ASSHOLE. (I had an enraged phone call with my pediatrician shortly thereafter, and she reported him to the hospital board and made arrangements with the hospitalists that my kid would be admitted to the hospitalist service with consult from outside specialist, rather than hospital specialist service, in any future admissions. Fortunately we have not needed to road test this.)

In stark contrast, our outside specialist (oh how I wish she had privileges at our hospital) is a scientist-minded person who was happy to walk me through several nodes of the decision tree regarding outpatient management. "First we will try this. If that isn't enough, we will escalate to these tests. I think it's unlikely that she has this, this, or this (for these reasons) but if we hit X node in the decision tree, it's probably time to test for them. I have asked her to talk to me like a scientist, and she does, and it's really refreshing.

The possibility of a trachea problem was actually raised first by Dr. Asshole's partner; I suggested it to outside specialist and she wasn't totally convinced but willing to consider it as a possibility. I spent a lot of time on the phone with her during the last hospital admission (because I didn't trust the care we were getting from Dr. Asshole) and she listened and took notes and gave me her opinion; when we had a horrifying immune scare, she took charge of coordinating with the immunologists at her hospital so we could do the Big Outpatient Workup in a single trip to the OR. She went into the bronchoscopy with all the things we'd discussed in mind, and lo and behold we came out of it with a diagnosis.

I still don't think she would have put together the whole story without my data input, and that's frustrating in its own right, BUT at least she listened to the data, used it to inform the observations she made, and added her clinical knowledge and experience that I as a parent simply had no way to provide. THAT, above and beyond anything else, is what parents of kids with complex medical issues need from their physicians.
posted by telepanda at 9:27 AM on April 19, 2016 [5 favorites]

Oh my shitting hell. I just had surgery a few weeks ago, and have to go in for another (unrelated but showed up in diagnosis for the first) procedure soon, and of the ~20 or so actual doctors and nurses I have interacted with, literally the only one who showed that they had actually read my chart past "ACDF surgery" was my freakin anaesthesiologist, about twenty minutes before surgery. It is maddening.

I see a neurologist for Chronic Daily Headache. Not quite two years ago, a regimen I'd been very stable and functional on failed, and we haven't been able to get things back under control. It's been a very trying time. At my last appointment, my neurologist decided it would be a good idea to review my chart, beginning with my very first visit to him in 2011, to see what had and hadn't worked, and try to figure out if there were hints in the things we'd tried in the past that might help me get to a better baseline. And that's exactly what he did—reviewed every visit I'd had with him, every note he'd made about my reports of how well I was doing, right up to the present day.

I was amazed. I have a terrible time getting my doctors to remember my history. And, except for my neurologist, they tend to hear, "things are a bit better" as "things are fixed."

This is the same doctor who, when I reported that a medication I was on was making it difficult-to-impossible to have orgasms, replied, "That won't do! Orgasms are one of the basic pleasures of life!"

I may actually be coming to the end of my time with him—his medication-based approach seems to have reached the point where it's done all it can for me. I'm not sure what's next after this, though. I've already had a couple of the "end of the line" headache treatments, like botox injections, without significant improvement. But he's been a good guy to have on my side.

On the subject of the article, I spent years being told I needed to be firmer with one of my kids. As AlexisSky said above, "The only way exposure and behavioral interventions (rewards, punishments) work is if the kid has the capacity to calm down. When children don't have this - the results are extremely dismal." This was the case for my child—he could not regulate himself in that way. But it was very hard for people to understand that. I think this kind of thinking falls under the category of defenses people put up to protect themselves: if the problem is that I'm not a firm enough parent, then they, who are firm parents, will never experience the challenges my family faces. It's a fantasy of control.
posted by not that girl at 7:35 AM on April 22, 2016 [3 favorites]

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