Tell me why you don't believe in pandas

amother

Lemon

Thu, Dec 19 2024, 2:07 pm

I don't know if I would use the words believe or not believe, but I do think that certain things are trends among certain communities. For example, I belong to a local non Jewish mommy group and there are 9 thousand members so it's a lot of people and not once has PANDAS ever been mentioned. Yet you hear about it all over imamother. Same with vaginismus. Yet in this non Jewish mommy group, every 2-3 children has autism and is gender queer. While I can't claim that pandas and vaginismus are not real, I don't think they're occurring at the rate that people here seem to think they do. I think it's a combination of many other factors.

amother

↑ Purple ↓

Thu, Dec 19 2024, 6:26 pm

amother NeonPurple wrote:

In this case it clearly plays a causative role.
The science is clear about that. It's not unknown or unclear or controversial or hypothetical.

"While there is no evidence to suggest that inflammation directly causes autism, studies have shown that children with autism often have higher levels of inflammation than typically developing children"
the science does not say that there is clear evidence that one factor is caused by another. Again, correlation does not equal causation.

amother

↑ NeonPurple ↓

Thu, Dec 19 2024, 6:33 pm

amother Purple wrote:

https://pmc.ncbi.nlm.nih.gov/a.....er%20(ASD)%20is,in%20its%20development%20and%20maintenance.

Quote:

Autism Spectrum Disorder (ASD) is characterized by persistent deficits in social communication and interaction and restricted-repetitive patterns of behavior, interests, or activities. Strong inflammation states are associated with ASD. This inflammatory condition is often linked to immune system dysfunction. Several cell types are enrolled to trigger and sustain these processes. Neuro-inflammation and neuro-immune abnormalities have now been established in ASD as key factors in its development and maintenance. In this review, we will explore inflammatory conditions, dysfunctions in neuro-immune cross-talk, and immune system treatments in ASD management.

amother

Slateblue

Thu, Dec 19 2024, 6:58 pm

amother NeonPurple wrote:

Treating pandas has given me my kid back so I guess you don't want to hear from me.

Same here
Our pediatrician does not believe in PANDAS
After almost 2 years of anxiety work, with multiple therapists and cranio and cbt/dbt
My son was still having tic episodes and crawling on the floor and crazy scary dangerous behaviors. We finally went to a different PA, did bloodwork, treated with azythormicen for only 3 weeks as a test run. And woahhhhh we started seeing our boy coming back!! Continued medicine for another 6 months. My son is now off completely and a different child bli ayin hara!!

amother

Begonia ↓

Thu, Dec 19 2024, 7:07 pm

I'm a pediatric NP. While I do believe that PANDAS exists, I have never, not once, encountered anything that even closely resembling it or a single parent asking me about it in the large non-Jewish practice where I work. I believe it's vastly overdiagnosed (mostly by ourselves) in our community.
(Although you can make the argument that strep is far more common in our community too.)

amother

↑ Tiffanyblue

Thu, Dec 19 2024, 7:30 pm

amother Begonia wrote:

You have never encountered a child with tics? Behavioral issues with sudden onset?

Why would a parent be asking about it - isn't it your responsibility as a NP to diagnose illness, not the parents?

The frum community has been made aware of PANDAS through the work of a frum pediatrician. The only time I have heard of PANDAS IRL is from this pediatrician's patients. This is explains why you don't see it... you are not practicing with this pediatrician.

amother

↑ Begonia ↓

Thu, Dec 19 2024, 7:36 pm

I have worked alongside pediatricians who treat PANDAS in the past. Of course I treat all sorts of behavioral and tic disorders. Rapid onset tic/OCD/ alongside symptoms such as severe rapid onset separation anxiety/bedwetting/food restriction? Haven't encountered in my day to day practice ever. Of course I screen for all these questions. And never had a parent present with that scenario. I absolutely believe in PANDAS and would make an appropriate referral if I encountered it.

amother

Jetblack

Thu, Dec 19 2024, 7:46 pm

My son was finally diagnosed with PANS and treated just with antibiotics for a few months.
I was skeptical but at my wits end with having a violent child who physically and emotionally abused me. Every day spent with him was torture. I wanted my child back.
I cannot describe to you how we suddenly got our child back.
My husband made fun at first PANDAS SHMANDAS….not a real thing… but when he saw with his own eyes the drastic change antibiotic brought out in him hen became a believer and he was the one on top of him to take his meds. BH I am grateful I discovered this issue. My sweet child had become a real case.
(On the other hand I have a friend who self-diagnosed all her kids with PANDAS and when antibiotic didn’t help she did raindrop technique and blah blah and symptoms still didn’t go away. So no. Not everyone hasnPANDAS/PANS. But just cuz people over diagnose doesn’t mean it isn’t real. )

amother

↑ Purple ↓

Thu, Dec 19 2024, 9:54 pm

amother NeonPurple wrote:

Let me ask u a question. If brain inflammation was really the overarching cause of ASD, by treating the brain inflammation, we would be treating the ASD. so over the next few years we should see a decrease in the treatment and diagnosis of Autism. since we are treating PANDAS more. If that doesn't happen this theory has been debunked.

and even if brain inflammation causes the development of ASD, treating it like strep throat will not reduce the effects on the brain. Its ridiculous to think u can reverse ASD with antibiotics.

amother

↑ NeonPurple ↓

Thu, Dec 19 2024, 10:16 pm

amother Purple wrote:

It's already being studied. Not ridiculous at all.

https://pmc.ncbi.nlm.nih.gov/a.....6890/

https://www.tandfonline.com/do.....21073

https://www.sciencedirect.com/.....00485

https://www.medicalnewstoday.c.....91399

https://www.fortunejournals.co......html

https://psychiatryonline.org/d.....0025a

https://www.frontiersin.org/jo...../full

https://pmc.ncbi.nlm.nih.gov/a.....2136/

https://mosaicdx.com/resource/.....etry/

https://www.mdpi.com/2077-0383/11/2/442

https://onlinelibrary.wiley.co.....39034

https://www.frontiersin.org/jo...../full

https://www.frontiersin.org/jo...../full

https://www.sciencedirect.com/.....02623

https://www.healio.com/news/pe.....l-hsv

And thousands more anecdotal reports in parent groups. Kids healing and losing ASD diagnoses every day. Obviously not as simple as treating strep throat, which is why parents get so invested doing different long term treatments. But the premise is definitely there. Treat the inflammation, treat the trigger for the inflammation (not always infections though infections are usually a big piece) and ASD symptoms will improve.

Seen it with my own eyes.

https://www.lymedisease.org/wh.....tism/

https://www.rosaliegreenbergmd.....esses

Maybe if more doctors were willing to go down this route, more kids would be healed. About the theory being debunked in the next few years: you're thinking is extremely simplistic.

https://neuroimmune.org/dr-sha.....view/

amother

↑ Purple ↓

Thu, Dec 19 2024, 10:51 pm

amother NeonPurple wrote:

I dont beleive this overarching healing, sorry I dont buy it. "its effective for some individual with ASD"... these articles don't prove ur point

amother

↑ Waterlily

Thu, Dec 19 2024, 10:53 pm

amother NeonPurple wrote:

These articles prove nothing. So many are about 1 case, or a few cases, they use a lot of causation and hypothesis. There is no proof here.

amother

↑ NeonPurple ↓

Thu, Dec 19 2024, 10:56 pm

amother Purple wrote:

I dont beleive this overarching healing, sorry I dont buy it. "its effective for some individual with ASD"... these articles don't prove ur point

They do prove my point. Treating infections and inflammation can result in a reduction in asd symptoms.
Even if it's only some individuals, is it not worth trying?
And if doctors refuse to even try, we can't possibly know how many more individuals can be helped.

amother

↑ Purple ↓

Thu, Dec 19 2024, 11:04 pm

amother NeonPurple wrote:

NO! that is exactly my point!!! PANDAS is the exception!!!! exactly, it is only some individuals when thousands of kids have it!!! let's not make it sound like every kid with Autism will get healed by going this route.
and do u know how many parents are running after this idea when their children have had developmental delays since theyre born, they just are wishing and in denial of the truth! instead of facing the music and providing their kid with the help they desperately need, they are running after this new medical diagnosis because yes, to them Autism is more stigmatized, or they are just wishing their problems will go away with some antibiotics!! And in the meantime, their child is just getting worse and worse, because they are not getting any support! It is so so so sad. really. And people fall for it so easily...

amother

↑ NeonPurple ↓

Thu, Dec 19 2024, 11:11 pm

amother Purple wrote:

You can't know if it's the exception if it hasn't been tried.
These studies didn't say we tried and most kids didn't respond.
They only tried on one or a tiny sample size. But they had great results.
More research is needed on treatments, granted.
But that inflammation is a driving force is an established fact.
Parents are allowed to choose to try and treat based on that premise. Even if it's experimental. Parents of autistic children today don't have years to wait for the exceedingly slow wheel of medical research to grind. They need to help their children now.
You can choose to do differently for your own child if you so desire.

amother

↑ NeonPurple ↓

Thu, Dec 19 2024, 11:13 pm

amother Purple wrote:

right, so at this point this is not evidence based. We call that Pseudoscience.
you want to submit ur kid to rounds of antibiotics for a clinical trial, go ahead. dont brainwash others to do the same.

No, emerging area of research is not pseudoscience.

And why would I not at the very least inform other parents that this is a potential treatment? Antibiotics can't be more risky than risperidone.

If your child ch"v had another disease, would you not want to know about ongoing clinical trials? Or off-label use of medication? This is done all the time for all kinds of ailments.

Fwiw, I'm not a big advocate of long term antibiotics. There are other ways to treat inflammation and infections. But again, the premise is the same.

amother

↑ Purple

Thu, Dec 19 2024, 11:20 pm

amother NeonPurple wrote:

Pseudoscience is calling out a misrepresentation of science. Nowhere does it say that treating the "brain inflammation" healed the ASD - besides a few anecdotal antidotes which are not to be trusted.
and How about researching evidence based practices and starting with that first? if you want to do other research, once ur child is getting help, I have no trouble with that.