Why is PANDAS controversial/not recognized by pediatricians?

amother

Ruby

Wed, Feb 13 2019, 4:17 pm

amother wrote:

(also responding to Chayalle) Obviously, and I hope nobody found that offensive. I was actually just borrowing the term from the documentary I mentioned earlier, "my kid is not crazy". The point isn't the insinuation that mentally ill kids are crazy, it's that dismissing these kids as mentally ill, and sending them to neurologists and psychologists who will likely put them on psych meds for life is a travesty, because treating it that way will just be putting a bandaid on their issues, when in reality their symptoms have a treatable cause, by means way safer and more effective than psych meds. If caught early on, a short round of antibiotics really may be all they need. And guess why pedis and parents are catching and treating this right when it happens? Because it's so "controversial".

First you said it's a crippling lifelong autoimmune disorder. Now you say it's treatable with a short course of oral abx.

Now do you see why it's a controversial diagnosis? The criteria keep shifting.

aricelli

Wed, Feb 13 2019, 4:39 pm

My little guy is adorable but boy is he tough! Before preK started I met with the teachers to explain what I was seeing and ask that we work as a team. They had a very tough time dealing with him and called me up saying: he must have pandas, check his blood... even as I explained that I saw his symptoms since birth they only thought it was pandas! No!
We are now dealing with it appropriately through doing the proper therapy and have seen huge results.
This is just one persons story.
Not to be taken as medical advice lol

amother

Khaki

Wed, Feb 13 2019, 4:41 pm

amother wrote:

Since when is a diagnosis dependent on what kind of treatment it responds to? Sometimes it responds to a short course of abx, sometimes to a longer one, sometimes not at all. But whatever the case is, why should an autoimmune disorder be treated with psychotropic medication, which acts as a bandaid at best, and is damaging and harmful at worst? Unless someone's literally exhausted all options. It's always preferable to address a cause.

ra_mom

Wed, Feb 13 2019, 4:53 pm

amother wrote:

OP here,

This has been extremely informative and eye opening.
I have many more questions, but for now... if PANDAS causes inflammation in the brain, then can't it be diagnosed with an MRI?

The tests generally used to diagnose PANDAS are not definitive. One of the controversial aspects of it.
There is one test that is definitive, but there's only a handful of labs that do it, it costs thousands of dollars out of pocket, and takes months to get back.

amother

Khaki

Wed, Feb 13 2019, 4:59 pm

For those that find that just antibiotics are not enough, there are so many other options out there. We have bh been able to manage just about all symptoms with allopathic and herbal antibiotics, allopathic and herbal anti inflammatories, a whole slew of other supplements, diet changes, working on gut health, etc. These are treatments that actually address the cause of the symptoms. If I would have listened to our pediatrician or the neurologist we saw, this kid would probably be on meds for adhd, anxiety and ocd, and probably some sleep stuff too.

amother

Lilac

Wed, Feb 13 2019, 5:11 pm

amother wrote:

My child had very disturbing tics. Outrageous ones that were getting worse and worse.
I asked the dr if it could be pandas. She tested for step, and our came out positive!
DC was on abx for at least a month, and bH cured.

As another poster wrote, many people, who are fine and healthy, would test positive for strep if everyone were randomly tested. That's partially why PANDAS is controversial.

amother

Purple

Wed, Feb 13 2019, 5:33 pm

I am very conflicted about this.

On the one hand, I can hear the physical cause of PANDAS, meaning strep causes inflammation in the brain.
On the other hand, the diagnosis is very unclear (high strep titers means the kid has recently fought off strep and this can be the case even if the kid hasn't been sick). And the cure is also controversial. My friend's son was on antibiotics for over two years!!! There's no way that such long-term use of antibiotics doesn't have other undesired, possibly long-term side effects. Antibiotics weren't meant to be used in such a manner. In addition, I remember reading that studies have shown that PANDAS is only a pediatric condition and that children can outgrow it.

amother

Lilac

Wed, Feb 13 2019, 5:34 pm

Chayalle wrote:

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.

This. This.

FranticFrummie

Wed, Feb 13 2019, 5:51 pm

What we know about the brain/body connections, and bacteria in general, is barely a drop in the ocean.

Imagine if PANDAS was only found in women. 100 years ago it would be considered a "hysterical disease", and today it would be considered "psychosomatic". Rolling Eyes

This is the progression of syndromes that aren't immediately obvious. 100 years from now doctors will look back and wonder why we were so ignorant.

We've created a vicious circle with strep and antibiotics. We never used to have PANDAS, and now it's everywhere. We now have drug resistant strep that keeps coming back over and over again. We have to create stronger antibiotics, and take them over longer periods of time.

Anti-anxiety meds do help with things like tics and OCD, but it's a chicken and the egg argument. Did the PANDAS cause the anxiety, or was the anxiety always there, but triggered by the PANDAS? If you cure one, will the other one stay, or go away as well?

Doctors hate things they cannot immediately diagnose, and pin down under a microscope. Millions of people have been sacrificed on the altar of doctor's egos. When doctors stop insisting that they are gods, then progress will move faster in research.

amother

Khaki

Wed, Feb 13 2019, 9:17 pm

amother wrote:

This. This.

Saw this exact thing with a relative of mine, who also talks about the evils of the pharma industry who only care about money and are trying to hide the truth from the public, how much her daughter has improved with herbs and vitamins and antibiotics.

In my own personal observation (which I keep to myself), her daughter's issues have never improved for any period of time, and 1 of the main issues going on is poor parenting.

And maybe, just maybe, she knows her daughter better than you do, and knows that she's made small improvements that may not be noticeable to you but sure are to her and, and that it's really not a parenting issue. But there'd be no way for you to know any of that, because your not this kids mom. Hope you're never tested. I also thought it was all baloney until it happened to me. Now we count the tiny successes that no one else knows about, and try to walk with our heads held high when our kid acts in a way that neither he nor we can control and we know people are judging us for it.

amother

Khaki

Wed, Feb 13 2019, 9:19 pm

amother wrote:

OP here again-
Thank you all so much!
Another question...Why is pandas any more controversial than adhd which also doesn't have definitive tests for diagnosis? The course of treatment for adhd is not less serious.

No real reason except mental health diagnoses are mainstream as long as they start and end in the brain, while talking about what's causing them and trying to treat at the root is considered out there.

amother

Khaki

Wed, Feb 13 2019, 9:26 pm

amother wrote:

That's why high strep titers per se are not diagnostic of pandas. Pandas is diagnosed clinically, irrespective of strep antibody levels. But the levels can give a clue as to what's going on. Typically, antibodies mean recent past infection or exposure, but very high antibodies, or continuously elevated antibodies can also mean chronic subclinical infection, or may possibly indicate chronic (auto)immune activation. The chronic suclinical infection hypothesis definitely fits nicely with why antibiotics work. Long term antibiotics definitely come with their risks, but so do psychotropic medications, and I don't think anyone can say for sure which is worse. And no, pandas is not the only condition for which long term antibiotics are used, so I'm not so sure it's accurate to say "they were never intended to be used that way". As for pandas being a pediatric disorder, that's generally understood as meaning that the onset has to be during childhood, not that once it sets in it's outgrown when adulthood is reached. Some people who have been treating do say that they see noticeable improvement with puberty, but not everybody. And pandas is definitely not something that goes away on its own!

aricelli

Wed, Feb 13 2019, 9:47 pm

In my own personal observation (which I keep to myself), her daughter's issues have never improved for any period of time, and 1 of the main issues going on is poor parenting.[/quote]

Oooh this hurts... dont do this. Reminds me of the time I went to PTA for my daughters and heard what a wonderful parent I am... went straight to my little boys school and heard about my “poor parenting skills”... theres so much we dont know about other people

amother

Lilac

Wed, Feb 13 2019, 11:55 pm

amother wrote:

You know, you're right, and I'm sorry, and I edited my comment