Why is PANDAS controversial/not recognized by pediatricians?

amother

Ruby

Wed, Feb 13 2019, 3:15 pm

So, another Khaki, did all the symptoms disappear after a round of abx? If that's all it takes most parents and professionals would be overjoyed. Trust me we love problems that are easy to diagnose and have simple solutions.

amother

Khaki

Wed, Feb 13 2019, 3:24 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.

"patients with various symptoms that indicate a mental health issue". Mental health issues and pandas are not mutually exclusive. In fact, they are 2 sides to the same coin. The psych diagnosis describes the symptoms, pandas proposes a cause for those symptoms. And if more doctors would actually be informed about pandas, we wouldn't have parents knowing their kid is sick, not crazy, without knowing how to help them.

Watch the documentary "My kid is not crazy"

amother

Khaki

Wed, Feb 13 2019, 3:26 pm

amother wrote:

Pandas is an infection driven autoimmune disorder. Autoimmune disorders are notoriously hard to treat, some even say impossible to cure. Does that mean they don't exist??

In case you're actually really interested, we've come a long way since onset, with a combination of antibiotics and a lot of other things.

amother

Black

Wed, Feb 13 2019, 3:29 pm

my son has textbook pandas :-(
I can tell the difference when we try to go off antibiotics for a week.
It is really hard to deal with him, and I am going down the conventional route with great a great therapist also.
He has become so so much better since we started treatment but it is still very hard.

amother

Ruby

Wed, Feb 13 2019, 3:35 pm

Rather than getting into endless flame wars, I'd encourage everyone to educate themselves from reputable sources.

https://www.nimh.nih.gov/healt.....shtml

https://kidshealth.org/en/parents/pandas.html

https://www.medscape.org/viewarticle/445217

amother

Ruby

Wed, Feb 13 2019, 3:37 pm

amother wrote:

Even if your child didnt have PANDAS I would never say your child is "crazy." Whether the symptoms have an infectious etiology or not should have no effect on how we perceive the child.

Chayalle

Wed, Feb 13 2019, 3:38 pm

amother wrote:

Khaki, patients with a mental health issue are not either crazy, and they are also sick.

Chayalle

Wed, Feb 13 2019, 3:39 pm

amother wrote:

Even if your child didnt have PANDAS I would never say your child is "crazy." Whether the symptoms have an infectious etiology or not should have no effect on how we perceive the child.

You beat me to it, and said it much more eloquently.

Chayalle

Wed, Feb 13 2019, 3:40 pm

amother wrote:

What kind of an autoimmune disorder is it? I thought it was viral (from strep.)

ra_mom

Wed, Feb 13 2019, 3:48 pm

Chayalle wrote:

What kind of an autoimmune disorder is it? I thought it was viral (from strep.)

It's an autoimmune inflammation of the brain. When test results show that the infection is still lingering, any antibiotics is helpful.
But the longer term treatment can also be controversial because it's the anti-inflammatory properties found in a specific brand Sandoz azithromycin that has shown to be helpful. And they haven't isolated that from the antibiotics itself yet.

Chayalle

Wed, Feb 13 2019, 3:58 pm

ra_mom wrote:

Autoimmune means when the body attacks itself. So, an inflammation of the brain is attacking another part of the body?

amother

Khaki

Wed, Feb 13 2019, 4:02 pm

amother wrote:

Even if your child didnt have PANDAS I would never say your child is "crazy." Whether the symptoms have an infectious etiology or not should have no effect on how we perceive the child.

(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".

amother

Khaki

Wed, Feb 13 2019, 4:03 pm

Chayalle wrote:

Autoimmune means when the body attacks itself. So, an inflammation of the brain is attacking another part of the body?

The immune system is mistakenly attacking the brain instead of the infection.

amother

Khaki

Wed, Feb 13 2019, 4:05 pm

ra_mom wrote:

Many pandas respond to antibiotics other than sandoz azith. So clearly it's not just the anti inflammatory and immune modulating properties. Though those may play a role too. I just don't believe that this is what the controversy is all about.

Chayalle

Wed, Feb 13 2019, 4:07 pm

amother wrote:

I think the flip side, and what has doctors concerned, is when people try to treat real mental illness with antibiotics, when what is unfortunately needed is psych meds.

amother

Khaki

Wed, Feb 13 2019, 4:09 pm

Chayalle wrote:

I think the flip side, and what has doctors concerned, is when people try to treat real mental illness with antibiotics, when what is unfortunately needed is psych meds.

Based on my experience and the experience of hundreds if not thousands of other pandas parents, this is a much smaller concern. The opposite occurs much more often Sad

ra_mom

Wed, Feb 13 2019, 4:13 pm

Chayalle wrote:

I think the flip side, and what has doctors concerned, is when people try to treat real mental illness with antibiotics, when what is unfortunately needed is psych meds.

This is a real concern and I see it on this site often. If the poster doesn't recommend exploring both routes and pushes just for PANDAS, especially when there aren't sudden onset symptoms, I really worry for that child.

It's usually apparent because these are the same people who like I wrote above, think antibiotics are magic and are in denial about the symptoms of tics, anxiety and obsessions and deny the child treatment from their suffering and can c"v cement the symptoms into something much worse and more lifelong.