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 3:40 pm

amother Cyan 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.

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.