doctor shopping vs 2nd opinion

[mkur]

Doctor shopping vs 2nd opinion - we're told to always get a 2nd opinion. I don't think it is doctor shopping if you keep getting different opinions and you keep looking for an answer and treatment that works.

[Mayzoo]

I worked in pharmacy for twenty years and the only time we used the term doctor shopping was when people sought out many doctors for controlled substances. A second opinion or even a third for legitimate medical conditions was never considered doctor shopping, it was actually considered wise.

[jojos_mom]

When it comes to finding the correct treatment for my child, I will shop til I drop!

[peglem]

I don't think there's anything wrong with doctor shopping, defined as looking for a doctor who will help my child get well. What's wrong with that? Should we all just accept whatever the local yocal says whether it makes sense or not, or whether it helps or not, or even if it makes our child worse? Yes, I doctor shop- wish I didn't have to.

[momcap]

I don't think it's fair to call it doctor shopping, when you are seeking to get your child well. If the 1st doctor has a treatment plan that doesn't work, what parent in their right mind would accept that? Or the 2nd, 3rd, or the 57th!!! As long as my child is not getting well, I'm going to keep looking for help. That's not shopping, that's just being a parent.

Edited October 16, 2012 by momcap

[Dedee]

Isn't it sad that we have to "doctor shop" for a physician who is educated on the most recent research that affects our children. Don't you find it odd that those who are up to date on the information aren't the ones using this term? I believe it is retaliatory terminology used by physicians trying to cover their own ignorance.

 

Dedee

[norcalmom]

This isn't Doctor Shopping, you are looking for a pandas specialist. So, if you are speaking with a doctor - its fair to ask - How many children have you treated with this disorder. How have you treated them and how did they respond? Do you have some current research I can read on this disorder? What types of studies are being done right now on this disorder. If they can't answer any of those questions satisfactorily - you are dealing with a person that doesn't know anything about what your child has. Probably knows less than you. Certainly can't tell the difference between PANS and many other disorders - because they've never seen it before.

 

If there are no pandas speciialists in your area, then you are looking for peditrician willing to work with a pandas (or PANS) specialist - like an LLMD (I would considerer an LLMD a PANS specialist)... There is a lot to know with these kids, and most of us have been to a number of other doctors first - because it is a diagnosis of "elimination" so you often have to see some specialists to rule out other disorders - esspecially neurological ones if your child has neurological symptoms. And, if those docs don't dx you - that is OK - becasue they knwo VERY little about the disorder in the vast majority of cases. They probably don't even know how littel they know, and also probably feel that they should be able to diagnose the disorder - so they may atempt to - without the proper testing and resources.

 

The pediatricians themselves don't have time to become a pans speciialist for the most part. There is too much too know. They have about 15 minutes per appointment, and lots of other common disorders they need to know about.

 

Unfortunately our SYSTEM has put these docs in this position. There is no affirmative statement from a guiding group on how to diagnose and treat - and there is this word "controversy" that surrounds this disorder - and opinions on both sides. Unless you read all the research (and between the lines of all the research) and then form your own opinion - and even then it is difficult because the research is misleading. Take for example Ed Kaplan's paper on tic and OCD exacerbation. He found no correllation between strep infection and exaerbations in Pandas dx kids vs "traditional" tourettes and OCD kids. It was a large study. They guy runs a WHO strep lab - only one in the US. Its a fair study - but - I can think of many reasons why the study is misleading. First, why not choose "normal" kids as the control group rather than kids with tourettes and OCD? And - the pandas kids were all very quick to get antibitotics (or were on prophylactic)...and many pandas kids react to much more than strep (viruses and stresss)- there was no accounting for that....the list goes on. And the pandas kids don't have to actually culture positive to react - they just need to have an immune response to have a flair - and he was only looking for active strep infection via ASO and culture...the list goes on, and he discloses alot of this himself at the end of this paper - but the truth is the pediattirican don't see this. They don't read the fine print at the end of the paper and take into account how it may bias the study.

 

 

The MODEL is wrong - we need PANS / PANDAS specialist. Like a lot of other disorders. You need a doctor that is the most up to date ont he latest reasearch. Most peds are horribly out of date. A doctor that syas they don't "believe" in something without reading ALL the research - not just the abstract - not just the words "rare and controversy" and even that the treatment is SSRI and CBT ( because that IS currently the treatment recommended by the NIH !) You need a doc that understands that we are in the early part of this "learning curve" and is willing to take what is known via research - and via anecdotal evidence (like the fact that several these docs have been treating with IVIG and PEX for over 10 years and have hundreds of success stories - and a long list of test looking for various infections that your ped is never going to run!).

 

All the Peds need to know is who to refer you to...They need to know a few signs that indicate pans - and the names and phone numbers of who you should call next. They shouldn't even attempt to diagnose it - or differentiate it between garden variety OCD and tourettes - its nearly impossible to do at this point in time (until there are some definatvie blood tests)

 

Sorry for my rant. It isn't our job to train or convince the doctors. LEt the market speak for itself. Take you kid to a specialist, or a doctory that is trying to get up to speed on becoming a specialist.

[airial95]

Before I comment - let me say that I agree with everything said so far - not to mention that when we were all pregnant most of us probably went and interviewed multiple pediatricians to find one that was right for your family - doctor "shopping" is good practice because the wrong doctor for your condition, or even personality can be detrimental to your health. Unfortunately, like someone said, the term got a negative connection with people who abuse controlled substances so here we are. I agree that we all need to find the right medical team that works best for our family, and if you have to go through a few duds to find the right ones - so be it.

 

With that being said, I want to share a point that my husband brought up to me based on the whole BCH situation. My husband is not the PANDAS activist in the family - that falls squarely on my shoulders. But he has gotten involved in some of the BCH stuff, posting it to his timeline and following our comments on the BCH page - and he made the comment to me that while most posts were well written, he was bothered by how often it was mentioned that people had to see "doctor after doctor after doctor" before someone would agree it was PANDAS. He even noted that it made us sound (as a community) a bit like a bunch of crazy "doctor shoppers" - and this was long before Beth's email. Mind you - this comment came from someone who is on the front lines of this battle too and understands the challenges with not only getting diagnosed, but treatment as well.

 

I think it goes back to the stigma of mental illenss - and I would think folks in the autism community may face some of the same criticism. Outsiders automatically want to assume the reason we've had to search for a doctor is because we didn't want to face the "uncomfortable truth" that our kids are really mentally ill (or autistic).

 

Yet - replace the term "OCD" with "cancer", or replace "Tourettes/tics" with "abdominal bleeding" and folks would think you were a terrible parent if you weren't getting a 2nd or 3rd opinion until the cause/appropriate treatment plan was found.

 

It's a tough situation to be in - we're on the forefront, and in 100 years from now folks are going to be amazed that there was a point in time where infection/autoimmune issues WEREN'T automatically considered in the mental health field. But we're a long way off from that (think about how many folks still think ulcers are stress related?)

 

Now - don't get me wrong - I'm not saying that we should stop shouting from the rooftops how hard it is to get help for our kids - but if someone from our own ranks could see the "doctor shopping" thing appearing as a common thread - maybe we need to find another way to phrase our message?

 

Please don't think this post is meant as a criticism aimed at anyone - it's just another point of view on how we discuss the issue, not the underlying problem that there's not enough folks out there available to treat our kids.

[thenmama]

Well said, Airial. I agree with you on this one. For various reasons, I haven't liked, or agreed with, much of the way Beth has been handling this case on the public side (I'll go hide from the incoming stones now:) ) , and I'm afraid some of the fire, and fueling of that fire, could work against PANDAS (which in this situation would also be in favor of BCH). Enlisting and unleashing those who've had the hardest roads to finding help, those who've been through the long lists of docs, to share their experiences on BCH's wall is one example. It's playing right into their hands, and making the PANDAS community too easy to dismiss (for those inclined to do so). Good activism is seeing through these things in advance and strategically approaching the issues in the ways most likely to make a hit, or deliver a message, etc. I would like to add more to your comments on this front, but have to run for now to tend to my 2 sick kiddos and 1 sick dh (I am the only one left standing-- and my coffee machine broke!!!!).

[kos_mom]

Just a comment about doctor shopping because we are in denial about our kids' mental health issues. I was willing to accept my child had a mental health issue--this was before I even thought of the Pandas possibility. The first psychiatrist ran through medication after medication and nothing worked. Then we went to the psych ward of a major hospital for a week and they said conversion disorder (officially adjustment disorder) so we stopped the medication.

 

The hospital said she needed a therapist. That lasted about a year and the DD felt it wasn't doing any good so I couldn't get her to go there and it stopped. I then tried her in four different programs--she wouldn't go after the first time to any of them, except for one she actually made three times. She went back to first psychiatrist. She tried medication for anxiety, medication for bipolar and again none of it had any effect so maybe she was borderline. DD self-admitted herself to a psych ward at a local hospital for one night and the next day she said the had to go. Finally, she agreed to see a new psychiatrist, whom she still sees occasionally. (Her comment, "He isn't stupid.")

 

My point is the enormous amount of doctor, therapist shopping I had to do as someone who clearly was not in denial about my child's mental health problems. I do think people believe we are doctor shopping until we find someone who says it's not a mental health problem, it's an infection. Well I am one who wasn't in denial, and had to go from doctor to doctor and therapist to therapist without any of them giving a real diagnosis--anxiety was eventually identified but then it was suggested it was co-morbid with a bunch of other things without any of them really hitting any nails on the head in terms of explanation and, more importantly, no treatment that made a dent. I had a DD who pretty much did not leave the house for a year except for doctor's appointments, had huge anxiety and panic attacks, was constantly throwing up, and was barely able to walk.

 

As someone who has seen a lot of the mental health system, I can tell you that you are lucky if you get a decent diagnosis and without that you are not going to get decent treatment. Doctor shopping is pretty rife among those with mental health problems.

 

I didn't doctor shop a Pandas specialist, she in a way came to me. I took my DS, long dx'ed Pandas by NIH, to Dr. L and she is the one who suggested I bring in DD based on the list of symptoms I gave her in the family history part of the interview and the high percentage of siblings with Pandas.

 

DD is now diagnosed and being treated for Pandas and her anxiety, which had completely overwhelmed her life is mostly gone--there are some others things still hanging about that we hope IVIG will help.

[airial95]

Just to clarify my comment - I wasn't implying that anyone here was doctor shopping because they wouldn't accept a mental illness dx, the point I was trying to make is that is the conclusion many folks who have never dealt with PANDAS, or any other critical illness for that matter, tends to jump to when we talk about how hard it was to get proper treatment.

[kos_mom]

airial,

 

I hope I didn't give the impression that I believe people here have doctor shopped for Pandas because they wouldn't accept a mental health dx. I agree, though, that some from the outside may well have that view.

 

My point is that I am sure many like me accepted a mental health dx but couldn't find any treatment that would work or stick and so had to "doctor shop" within the mental health system with very unsatisfactory results. There are only so many times one can hear one's child is "complicated" as the explanation for why nothing is working!

 

Amazing how much more straightforward the problems became once a Pandas dx was considered.

 

Ko's Mom

[HaylesJohnson]

As someone very new to the world of POSSIBLE PANDAS/PANS - I must say, I have remained VERY conscious of this throughout these past couple of months.

 

I have worried so much that people might think I am doctor shopping, or that I am simply unwilling to accept diagnoses made thus far. For me, I have continued to seek out someone who will just LISTEN to what I have to say about the symptoms and the way this has presented, and be happy to make the connections. Unfortunately though the Pediatrician agrees there is an organic reason (post infection) for SOME of the symptoms, but he still feels there is a need for a Tourettes diagnosis separately - which to me is not common sense, this point alone would make me want to push on and find someone more knowledgeable about these types of conditions simply to ensure my son's health is in good hands. If it turns out to be Tourettes, along with something else, so be it, but I would want to be 100% certain.

 

But let me say this, it is a sad state of affairs when we as parents are worried that seeking out a second opinion and advocating for our child will look to others as though we WANT a certain diagnosis for our children and are unable to stop until we have it - because we all know, that is simply not the case. I do hope this "doctor shopping" attitude from outsiders does not sway some parents to stop searching for answers and following their instincts!!

[momcap]

Airial raises a good point that when PANDAS parents get accused of doctor shopping there is an implication that they just can't accept their child's mental illness. Well I'm in the same boat as ko's mom. We ran through all available options in mental health, accumulating an alphabet soup of psych labels, all the while watching our son continue to deteriorate before we finally realized something else was going on. When he started on antibiotics for the first time we watched an overnight transformation that was nothing short of a miracle.

[SSS]

Honestly, it'd be a whole lot easier sometimes to say frock it, it's Aspergers.

Instead, I've spent my 401k trying to figure it out and help.

And if I had endless money, you bet, I'd fly around and get some more input.