Why is PANDAS controversial/not recognized by pediatricians?

amother

Magenta ↓

Wed, Feb 13 2019, 12:25 pm

Please help me to understand. If there are clear lab work results, why is PANDAS not recognized by most pediatricians?

Anonymous because many of my friends know I'm looking into PANDAS and I don't want to out my username.

amother

Mustard

Wed, Feb 13 2019, 12:33 pm

This was my understanding:

every dr does recognize pandas

The issue some drs have is that it is over diagnosed and antibiotics given too often. There is a very specific guidelines that dictate what is pandas and some drs apply to broadly. Drs sometimes feel parents hope it is pandas rather then a different issue that must be addressed by a therapist so they try to push the panda diagnoses and failing to treat other issues in s timely fashion.
Some drs believe the strep Bri has the underlying symptoms to the fore front and even treating with antibiotics should still see if can get to underlying issues.

Obviously a lot of controversy surrounds this due to the differing of opinions.

ra_mom ↓

Wed, Feb 13 2019, 12:36 pm

The diagnosis and the treatment are both considered controversial. Some doctors consider the diagnosis itself hooey. Unfortunately some feel this way about fibromyalgia too.

amother

Ruby ↓

Wed, Feb 13 2019, 1:05 pm

The problem is differentiating PANDAS from run-of-the-mill ADHD, tics or OCD. Since strep infection is so common in kids, how do you know the strep was the trigger for the symptoms? Having positive strep titers only tells you that they had a strep infection in the recent past. It's not proof that strep is causing the symptoms unless there's a clear pattern of worsening in direct association with strep infection. You treat with ABX only if theres an active strep infection (which you would treat anyway).

aricelli ↓

Wed, Feb 13 2019, 1:10 pm

I asked my pediatrician about this. He claims he once did a random study while working in a camp by testing children without any symptoms for this- many tested positive. So he says that because so many people are walking around with positive results its hard to know for sure if this is causing a childs symptoms or its something else when the child will test positive. Just quoting- dont yell!

Chayalle ↓

Wed, Feb 13 2019, 1:40 pm

What mustard, Ruby and aricelli said.

(BTW - welcome aricelli! I see you are new here, and I already liked several of your posts! Nice to have you around!)

My sister is a doctor. She says she has seen patients with various symptoms that indicate a mental health issue. The parents will run to get a PANDAS diagnosis, because for some reason, this is preferable to a mental health diagnosis - usually because of stigma. She has seen worsening symptoms, kids who look terrible because they are not being treated and they are not being given the help they desperately need. Sometimes, by the time the parent is willing to concede the issue, the child has crossed a line whereby treating them is so much more complicated and severe - because early treatment of certain disorders breeds the best results.

I'm not afraid of rotten tomatoes.

↑ aricelli ↓

Wed, Feb 13 2019, 1:53 pm

Thanks Chayalle- to be fair, I had joined once before for a short while only- because I was a bit shocked at how venemous some were to seemingly innocuous statements... then I realized that a few bullies dont invalidate a whole group and I’m glad I rejoined.

↑ aricelli ↓

Wed, Feb 13 2019, 1:57 pm

Ahhh Chayalle- but youre a brave one. I wanted to say this but held my mouth closed because of the anger I unleashed when I previously stated something to this effect. (Yes, I am scared of the tomato throwing. It was the squishy ones too- I know this because I still have the juice dripping down my forehead and it doesnt feel good)

↑ aricelli ↓

Wed, Feb 13 2019, 2:02 pm

Just to give an example:
Last year my friend and I both got calls from a principal about anxiety symptoms in our daughters among other strange behaviors. My friend automatically said “pandas” while I said “yes, perhaps this child can use more attention due to some things that are currently going on at home”. It’s not so easy to face up that maybe you can use some improvement or that maybe your child (or yourself) does have an emotional deficit that needs therapy.
Btw- I am not dismissive of pandas, I have medicated a child at one point when needed

amother

↑ Ruby ↓

Wed, Feb 13 2019, 2:11 pm

When you say medicated, do you mean treated with antibiotics, or treated with ADHD meds? Because I'm not so sure even if the PANDAS link is real that everything is cured by a round of abx

Fox

Wed, Feb 13 2019, 2:12 pm

The truth is that many "syndromes" are difficult to diagnose and/or controversial. By definition, a syndrome is a collection of symptoms that may or may not be related, and which may or may not result in similar effects on a patient's health.

↑ aricelli ↓

Wed, Feb 13 2019, 2:20 pm

Amother ruby:
My pediatrician (whos a non believer) put my son on a month of antibiotics when he had extreme stomach pain and the only thing that showed up was strep in his bloodwork. Though I’m not even sure that would be considered pandas? I always try to keep an open mind when talking about anything medical because there is so much that science has yet to learn. I only feel that its a shame that people would rather jump to pandas rather than acknowleging an emotional issue.

↑ ra_mom ↓

Wed, Feb 13 2019, 3:00 pm

aricelli wrote:

Amother ruby:
Youre right
Even panda believers do acknowlege the need for therapy in addition to a round of antibiotics

Antibiotics is not magic for PANDAS sufferers. The anxiety, tics or obsessions still need to be dealt with the conventional way, even while taking antibiotics, otherwise the child will suffer and those issues will become lifelong.
I think the bad rap comes from people who believe it's all about the antibiotics and that the anxiety, tics or obsessions don't have to be dealt with.

amother

Khaki ↓

Wed, Feb 13 2019, 3:11 pm

a) despite the literature being chock full of evidence, it is a huge paradigm shift for traditionally trained doctors to start thinking of psych symptoms as having infectious, autoimmune or inflammatory etiology.

b) follow the money. there is a lot more money to be made on psych drugs than on antibiotics

c) follow the money. one of the most vocal and prestigious proponents on pandas denial holds a patent for a tic medication

d) there is no clear cut lab test for pandas. It is a clinical diagnosis, and that means you need a very good understanding of the disorder, what it looks and like and how it works to feel comfortable diagnosing it.

e) some pandas clinicians like to the diagnostic criteria very strict for research purposes, so anyone who doesn't have sudden dramatic onset is automatically excluded, despite children ticking off every other box on the list.

there are more reasons, but that's all I can think of right now. I will say, as a pandas parent, that once you've seen it, you can smell it a mile away. And you just know that it exists, no matter how many people tell you it doesn't.

amother

↑ Khaki ↓

Wed, Feb 13 2019, 3:13 pm

aricelli wrote:

stomach pain may be an atypical presentation for strep, but it's still not pandas. you need neuropsych symptoms associated with strep for a pandas diagnosis.

amother

↑ Khaki ↓

Wed, Feb 13 2019, 3:14 pm

amother wrote:

When you say medicated, do you mean treated with antibiotics, or treated with ADHD meds? Because I'm not so sure even if the PANDAS link is real that everything is cured by a round of abx

Just because it's pandas, doesn't mean it will be cured by a round of abx. Unfortunately. But that doesn't mean the only other option is "emotional issues".