Tell me why you don't believe in pandas

amother

↑ Slategray

Today at 3:06 pm

amother Catmint wrote:

PANDAS is definitely real and like certain other things is both under diagnosed and over diagnosed. It's not the easiest thing to definitively diagnose and there's a long history of doctors being condescending and dismissive to concerned mothers. As someone who has a (totally different) chronic illness that is difficult to definitively diagnose and who was also dismissed and gaslit by doctors for years, when you finally figure out and get answers and start to see results, it's common to have this instinct to shout it from the rooftops: if you don't know what's wrong, it's probably THIS! LOOK INTO IT! You start to see undiagnosed cases EVERYWHERE. So yes, PANDAS is in that category. The parents get almost...evangelical about it. And I get how that's a turnoff for many. But I also understand why they come off like that.

Definitely this.

Before my child got sick, I knew one woman who had a movement disorder.
I never saw actual tics on anyone.
But as soon as my child got sick I started noticing it everywhere. There are so so many children and even adults with tics. It's actually pretty sad. You notice what the things that you're living with.

Like when dh got a new car, I thought it was a unique color and model because I've never noticed it before. But once we had it. I started noticing it on the road all the time. So I thought it was probably only now that it got popular. But a Google search actually showed that it used to be a lot more popular in the last 5 years than it is now.
It's just how it works.

amother

↑ Cyan ↓

Today at 3:07 pm

amother NeonPurple wrote:

And what's your proposed mechanism for how strep bacteria affect behavior outside of the immune response?

[I think the fact that you think this way is due to how much pandas research has made inroads in our outlook. We now think it's "normal" for strep to cause acting out, yet we will insist it's NOT pandas. Before pandas was coined, the very idea that strep affects behavior was considered outlandish. In a classical sense, bacterial infections present with LOCALIZED immune responses and all the typical symptoms we associate with strep aka pharyngitis are due to a mounting immune response in the area aimed at clearing the pathogen].

Fwiw, Dr. Shulman once gave a lecture on kids who present with behavioral symptoms while they have an active strep infections and their symptoms clear once the infection is gone. She called it Pandas minor. Because at the end of the day it's the same immune response aimed at the brain causing the behaviors. Even if it doesn't turn into a chronic condition.

Children have behavioral problems with any and all types of infections. It's not strep dependent.

PANDAS is something else.

amother

↑ Cyan ↓

Today at 3:16 pm

amother NeonPurple wrote:

I agree that any infection can cause behavioral issues in children, but the mechanism behind this is a mistaken immune response directed at the brain, aka brain inflammation aka pandas/pans/AE.

There is no other known mechanism in science to explain pathogens causing alterations in brain function.

Post viral encephalitis can occur after infections with many things and is not PANDAS.
Besides for that, not every instance of a child acting out while not feeling well is because of an immune response. It can simply be because they are under the weather.
Then it gets worse because the parents feed into it.

There is PANDAS, but not as much as some people want to make you believe.

amother

↑ NeonPurple ↓

Today at 3:52 pm

amother Brown wrote:

I went to a top pediatric infectious disease doctor when my daughter had “missed strep” over the summer in sleepaway camp. She was really sick from it over the summer (Group A Strep and scarlet fever, then triggered mono and shortness of breath) and I ran around all second half going to specialists to see what needed to be done (pediatrician, cardiology, immunology and so on). Anyway when I went to the top infectious disease doctor I asked him about Pandas and he was dismissive of it. (He was at Northwell). I don’t want to write his name because it’s a public forum, but he seemed very knowledgeable and experienced and we trusted him.

He's not up to date. The AAP just issued a report on pandas and pans. It contains several inaccuracies and is a bit too little too late for many parents, but at this point anyone who says it doesn't exist is just not caught up.

https://publications.aap.org/p.....ected

amother

↑ Cyan

Today at 4:06 pm

amother NeonPurple wrote:

Pandas is post bacterial infection encephalitis so they ARE the same thing, or at least under the same umbrella.

No, kids don't act out from being sick. Not to this degree. That's just not a thing.

No, PANDAS is Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections - it is not the same as post viral encephalitis. It is specific to strep. It can fall under the same category of encephalitis, but mild post viral encephalitis after covid is not PANDAS.

Regarding kids acting out from being sick. If you are talking about real PANDAS, then I agree with you.

I know children who experience EXTREME OCD from a cold and who have tested negative for strep so don't just on the strep line. My friend's son becomes extremely aggressive and even develops a tic with every single virus he gets for around 7-12 days. This is all normal. She went to a psychiatrist. It's normal. So if you're describing something more extreme, I agree it is not a thing. If someone sees this in their child they should go to t a doctor, but PANDAS is not the only outcome.

There are children who behave much less alarmingly and the parents call what is a parenting issue PANDAS.

If you really want to help support PANDAS and children with PANDAS, then you would know that calling everything PANDAS does just the opposite. It weakens the case in support of PANDAS.

amother

↑ NeonPurple ↓

Today at 4:13 pm

amother Cyan wrote:

When it's caused by a virus it's called PANS. The mechanism is the same.

A misdirected immune response is never normal. It may be common and it may self resolve, but it's still a glitch.

Every disease is a spectrum from mild to severe. The trigger may be different and the presentation may be different but the disease process is what matters because that's how we fine tune treatments.

So you're friends kid has mild post viral encephalitis and some kids have severe post strep encephalitis but essentially they are the same disease and will benefit from the same or similar treatments.

amother

Lightcyan

Today at 5:49 pm

amother Slategray wrote:

We did meds. Long term abx, steroids, ibuprofen / neproxen.
We saw better results with a combo of diet changes, vitamins/minerals/healing herbs, eessential oils and homeopathy than with traditional medicine.
The doctor suggested the next step in the medical field will be ivig which would be traumatizing and out of pocket. So we did the natural route first and bh it worked.
My child had pans (not strep. But different bacterial infection).

At the moment I am so burnt out, that I'm not capable of doing more. All my other kids are still suffering the fallout of her illness, the kid below her that she choked out and watched everything, her anxiety and ptsd is thru the roof. She's barely functional. We tried shielding her but it wasn't possible. She also mimicked a lot if symptoms becuase she saw it brought attention. It's a tough ride.
Bh my kids growing up, she's still struggling but it's not possible for me to do anything more.
I do want to take her to a cranio sacral therapist and maybe reflex integration and/ or do Mrs. Mertzbach's program. I've seen kids with tics get better with her program.
To some degree I feel like it's just left over damage rather than still ill. Her immune system is regulated. She gets I'll with fever and sore throat and / or regular viral symptoms. Her tics do get worse for a bit, but then better. And she doesn't go crazy at all. Normal regular sick symptoms.

I remember the JOY the first time she broke a fever 3 years ago. Omg was I EXCITED!!!!!

To the poster that's skeptical about the "pandas mom" self identification title - pans/pandas/ae takes over you're entire life. COMPLETELY.
The days on end where you're child will.not.fall.asleep and the times you're 4 yo child threatens you with a knife with a hollow look in their eyes. And the times your child begs you that they don't want to wake up anymore. And the times your child will.not.leave.your.side and will go absolutely berserk if someone other than immediate family walks thru your door. Or when your kid runs out of the house at 10 pm completely naked in 5° weather in pitch black darkness, hiding and yelling HELP! HELP! and you cannot find them. And all that at the same time while also being a wife and mother to other children and trying to protect them..... and being a duaghter and sister. And neighbor and friend. And when you do share it gets poopooed away or told its all "emotional" becuase you had a challanging childhood....
And the doctors not listening to you and telling you you are the problem.
I have serious serious ptds btw.
It's a whole different disease. There is ZERO support as a community. It's quiet and hush hush. No volunteers, no meal train, no one to guide and listen to you.

Bh now there is an amazing org, chay4lyme and an amazing WhatsApp chat group.
But I/we didn't always have that. And it still doesn't give any day to day practical help just living the life with an ill child.

So yes. We are "pandas moms"

Sorry if I'm going off topic but can you tell me more about what you have done/ plan to do for her tics? We are dealing with severe Tourette's (outgrew the pandas diagnosis but left with severe tics) and have tried so many things but nothing works.

amother

Banana ↓

Today at 7:59 pm

I'm too drained emotionally and physically as an ae/pans mom to fully reply to this thread...but the responses here are super painful and hurtful. I have 3 children with severe autoimmune encephalitis following strep/covid and tick bites...
Yet, according to this thread, I'm in denial that my kids need psychiatric help and their condition is a parental cop out...
I have 4 siblings plus a parent with another famous autoimmune disease...noone is calling THAT a parental denial/copout.
Pandas caused by strep or pans caused by any other virus or bacteria is an AUTOIMMUNE condition...
It is a condition that attacks the brain and wreaks havoc.
The latest research is proving this connection when previously it was thought that the brain was blocked off from the immune system.
Alzheimers, schizophrenia, Parkinson's, dementia, some autism, bipolar etc...are all being researched now in TOP research hospitals as having a basis of an immune system attack on the brain...
Google the Columbia psychiatrist who cured someone in a schizophrenic stupor for twenty years with heavy duty immune system treatment (PEX, ivig etc).
Or the study of severe PPD out of London that recently came out that it was autoimmune encephalitis after childbirth.

When we say that tics, anxiety, and a host of other behavioural and mental health symptoms are pandas...we mean, there is an immune system attacking the brain and causing a host of issues.
It requires a paradigm shift on the part of us all and the practitioners on the function of the immune system and its effects on the brain.
(Saying this as a parent of a child who a few weeks after covid, had hallucinations and such massive memory loss, he couldn't remember how to get out my bedroom. And this was second child with autoimmune encephalitis...so double motrin took away the hallucinations in 20 minutes. He was 8 years old. I knew what to do...but now that my 3rd child is diagnosed as well...how do I look to you all? A parent in denial I'm sure. Just get the kids on psych meds...the cure to all ills...yet noone has ever mentioned my parents being in denial that four kids have another famous autoimmune condition..)
The gaslighting here is real...
Pandas/pans/autoimmune encephalitis is an Autoimmune condition.. like type 1 diabetes, celiac, crohn's etc...it flares, goes into remission, can flare again etc...
I bentch all of you to never have to know what this is...its hell on earth with no end in site...and ZERO support...and with threads like these saying you made it all up ...
Oh, and if you are only looking for strep titers, you are looking at the wrong place...you need to be looking ata full immune system workup...autoimmune and cytokines etc...
If your child or urself has a sudden change of behaviour or in mental health status, that is the first place to look...immune system...in my head, it's a travesty that anti depressants and psych meds are dispensed so indiscriminately without a full immune and neurological workup...
And FYI, add, asd, gad, depression, tourettes are not based on any physical (bloodwork, imaging) either but just a set of symptoms...so what is the great travesty of pandas EVEN if there isnt bloodwork proving previous strep (and like I said, if you haven't done bloodwork for the immune system, you haven't done the right bloodwork)
.is antibiotics and motrin more dangerous than add/psych meds? As far as I know, there isnt any suicidal warnings on antibiotics like there are on psych meds...

amother

Buttercup

Today at 8:04 pm

Parents like to blame something for their child’s behavioral issue. I have a friend who had a newborn and her toddler was acting out so she decided he had pandas-chances are the kid was acting out because he had a new baby at home stealing his parents attention. So many people will grab a diagnosis because it’s easier than dealing with the other problems at play.
However, as someone whose child snapped from one day to the next, following a strep infection, it was crystal clear that it was pandas. Bh we got it treated and he’s a different child now. But we had a very clear trail. It was completely sudden and happened when he got strep. And now I live in fear that if he ever gets exposed to strep we’ll have to fo through that again, it was awful

amother

Purple ↓

Today at 9:17 pm

amother OP wrote:

I hear so much talk about pandas and my pediatrician is not a big believer unless there were extreme circumstances. I have a son with a more rigid personality and every time he misbehaves / has a sore throat everyone school etc quickly calls pandas. Every time I talk to my Dr he explains why it doesn't seem likely and I think it makes sense what he says. But I also don't want to miss something that could help my son. If you have gone down the pandas route and it didn't help or you also don't believe it or your practitioner doesn't why is that ?

Let's put it this way... if your child acts different in different settings (meaning they can control it, to a certain extent) it is most definitely not PANDAS. I'm a healthcare professional and see parents of children that most likely have ASD, or other disorders (or create this monster by giving in to everything) that blanket their denial of what is actually going on, with this miracle diagnosis of PANDAS. It makes them believe that all their problems will disappear, and it takes years and years of chasing that hope before getting their child the help they actually need.

amother

↑ Purple

Today at 9:33 pm

amother Banana wrote:

most likely ppl are not talking about you. we can believe that PANDAS does exist, while also recognizing that others are using it as a crutch

amother

↑ NeonPurple ↓

Today at 9:43 pm

amother Purple wrote:

Those parents are right.

Guess what's a major driver of ASD?

Neuroinflammation.

https://pmc.ncbi.nlm.nih.gov/a.....9953/

https://psychiatryonline.org/d.....22004

https://www.nature.com/article.....902-8

https://pubmed.ncbi.nlm.nih.gov/31029798/

https://www.mdpi.com/1422-0067/24/6/5487

amother

↑ Waterlily ↓

Today at 9:47 pm

amother NeonPurple wrote:

Anyone can write medical articles, anyone can do a study on 10 people. Doesn’t mean it’s the truth. It’s a trendy movement and yes many doctors are making money from all the desperate people that are paying an arm and a leg for them to sell their cures. This is not proof of anything. The majority of the medical field can easily see that it is being used as a cover up for many other issues.

amother

↑ Banana ↓

Today at 9:53 pm

amother Purple wrote:

most likely ppl are not talking about you. we can believe that PANDAS does exist, while also recognizing that others are using it as a crutch

Crutch as opposed to what diagnosis?
What if the overall diagnosis is brain inflammation and bringing it down helps relieve whatever behaviours we are seeing?
One of my children has severe afrid as part of his disease profile...yet 24 hours after starting a new antibiotics, he had tasted and eaten 3 new foods no problem? And what if, any time he is sick/flaring, he goes back to arfid?
What if anorexia, bipolar, severe odd is all caused by brain inflammation and treating it cures it? Etc. Etc.
That is what I am telling you...
Think outside the box...
When I say maybe your child has pandas or lyme, I am really saying, based on my experience, these conditions/behaviours may very well be caused by brain inflammation and please look into that so you can heal...(and what is triggering the inflammatory response cam literally be any bacteria or virus).
Do you know that when they have evidence of c diff and parasites in the brains of dead alzheimers patients? How did it get there? Science is fluid and changing...
Did you know that the reason we treat strep as serious is because it can cause rheumatic fever? Autoimmune Attack of the heart? If strep can attack the heart, what is stopping it from attacking the brain? And what does it look like if it does?
What is stopping any bacteria or virus or parasite or fungus from getting into the brain? And what does it look like if it does? Is it bacteria in the brain or autoimmune or inflammatory cytokines attacking the brain?
Why cant autism have been caused by an autoimmune attack on a very young baby's brain after a virus or illness before they arr two? Especially regressive autism where they lose the skills they had before?
There is fascinating research being done and studies galore to explore if this interests you.
But do NOT put out a blanket statement that most kids dont have pandas...and parents are using the diagnosis as a parenting copout.