Where does pandas disappear to

amother

Viola

Thu, Nov 30 2023, 2:04 pm

mandr wrote:

Not sure why you're getting so explosive. I wasn't trying to be a therapist. I just stated a general opinion that applies to many situations. I understand you are the parent of a child with pandas and I'm so sorry you have to go through this. That said, I think OP is referring to the people who casually label all such type of behavior as Pandas. Like your kid misbehaved yesterday, check for pandas. Tantrum in the grocery, pandas. The people who blame every little thing on possible Pandas. When in reality it's a very rare condition.

You clearly stated in list item 3 that there's a simple cure for it. I'm very interested in hearing about that.

Unfortunately it's not rare at all.

amother

DarkGray

Thu, Nov 30 2023, 2:05 pm

mandr wrote:

Thank God an antibiotic course for many many many months worked wonders on my son. I have him back.
I wouldn’t call my answer explosive, but absolutely I’m defensive. Don’t invalidate someone without experience and actual knowledge. I don’t know anyone who actually has pandas who casually was diagnosed with a misbehavior or a tantrum. It’s completely different (you can see it in their eyes, they are completely out to lunch. They might not even remember it a minute after the episode passed)

Oh, and it’s not rare!!

Sunny Days

Thu, Nov 30 2023, 2:25 pm

amother DarkGray wrote:

It’s casually diagnosed here on every thread…
Which makes me hyper-evaluate all my kids behavior issues. Hmm is this a regular meltdown/anxiety etc or perhaps this kid has pandas!

amother

DarkGray

Thu, Nov 30 2023, 2:33 pm

Sunny Days wrote:

It’s casually diagnosed here on every thread…
Which makes me hyper-evaluate all my kids behavior issues. Hmm is this a regular meltdown/anxiety etc or perhaps this kid has pandas!

I hear you. One of the main markers of pandas is sudden onset. Kids have tantrums, that’s normal.
A dramatic change in behavior in a very short time is a huge marker. Tics and ocd are other markers. Bed wetting is another
There is a difference between pandas misbehavior and normal misbehavior in my experience. With pandas, there is this complete detachment that my son had. His eyes were dead, he didn’t even remember what happened after an episode. It’s a scary switch
He also was a model student, quiet and serious, and very popular boy, and in the space of a few weeks/days, went to doing literal 2 year old behavior, and wouldn’t do normal things in class, with friends, at home with siblings…
It was dramatic
It was not second guessing after a child has a huge meltdown

Success10

Thu, Nov 30 2023, 2:52 pm

amother DarkGray wrote:

A sudden, drastic change in personality usually indicates some sort of trauma. How did you get to Pandas?

Sunny Days

Thu, Nov 30 2023, 3:02 pm

amother DarkGray wrote:

It is more than regular misbehavior and lots of anxiety/ocd and flares up massively with strep. But I can’t pinpoint to it starting suddenly.

amother

Thu, Nov 30 2023, 3:06 pm

amother Snow wrote:

I’m not sure what you mean, you’re basing what on discussions? You’re not bashing the people who test and treat pandas, only those who discuss it?

Just started the antibiotic regiment but my pediatrician is not well versed in the treatment and I’m searching for doctors who can help.

I had a long talk with dr shulman years ago. She also treated a family member who had tics very successfully. The tics went away and never returned. I actually posted about her back in the beginning years of this site. I used to point out pandas when I thought it could be the case. But lately it's turned into something ridiculous and I'm tired of watching children suffer from many different issues while there parents "run" to miracle workers for "pandas".

amother

Thu, Nov 30 2023, 3:08 pm

amother Tomato wrote:

huh? Pandas is a REAL thing. It shows up in bloodwork. It is not the answer to everything...

Right and then what's the next step? Why doesn't everyone go on antibiotics for a few months, and do the whole regiment that Dr. Shulman came up with? There is no "pandas" in the bloodtest, it's strep that shows up.

amother

Pear

Thu, Nov 30 2023, 3:10 pm

amother OP wrote:

What are you suggesting? That people treat a medical problem with psychiatric interventions?

amother

Thu, Nov 30 2023, 3:28 pm

amother Pear wrote:

What are you suggesting? That people treat a medical problem with psychiatric interventions?

Either it's pandas and needs a few months of antibiotics, or it's not that and needs some other diagnosis. The behaviors that come with pandas are treatable, if it isn't successful being treated that way, then you need to move on and realize it's not pandas. How did the whole it's pandas but can't be treated by the antibiotics protocol become mainstream?

amother

Vermilion

Thu, Nov 30 2023, 3:30 pm

Success10 wrote:

A sudden, drastic change in personality usually indicates some sort of trauma. How did you get to Pandas?

This whole thread is full of so much bs I can't.
You don't know what trauma is.
OP doesn't know what pandas is
If you did you wouldn't make these bs statements

amother

Thu, Nov 30 2023, 3:32 pm

amother Vermilion wrote:

This whole thread is full of so much bs I can't.
You don't know what trauma is.
OP doesn't know what pandas is
If you did you wouldn't make these bs statements

I guess you are the most intelligent person in the world. I am actually repeating what the expert in pandas has said. So yeah I'm not sure you know who is full of bs. And I also agree that trauma is sudden onset so saying sudden onset is automatically proof of pandas is also bs. Sorry this is so upsetting to you.

amother

DarkGray

Thu, Nov 30 2023, 3:36 pm

Success10 wrote:

A sudden, drastic change in personality usually indicates some sort of trauma. How did you get to Pandas?

As I said in my previous posts, with a lot of consults, therapy (play and behavioral), and speaking to experts
The therapists basically told us that there’s nothing they could do. It’s a chemical imbalance, it’s not something therapy can address
He didn’t have any of these behaviors before, it wasn’t some ongoing issue or personality that he had
And like I said, a huge marker in pandas is the sudden onset. That’s one of the diagnostic tools

amother

DarkGray

Thu, Nov 30 2023, 3:38 pm

Sunny Days wrote:

It is more than regular misbehavior and lots of anxiety/ocd and flares up massively with strep. But I can’t pinpoint to it starting suddenly.

If you believe there is something going on (parents know when something is in the normal range or not) then start with bloodwork

amother

DarkGray

Thu, Nov 30 2023, 3:42 pm

amother OP wrote:

No, it is not strep. It’s a high level of strep antibodies. Even that on its own doesn’t mean someone has pandas. It’s your brain recognizing those antibodies as foreign agents and attacking them. That’s the simplest explanation of how it works

And you don’t just take antibiotics for no reason. Your literally destroying the entire gut health of your child. That’s not something you do lightly. Antibiotics are not candy

amother

Pear

Thu, Nov 30 2023, 4:51 pm

amother OP wrote:

Antibiotics, while still an important tool, are being used much more sparingly these days. Antibiotic resistance is a real problem, and antibiotics harm the healthy microbiome. Antibiotics aren't guaranteed to work. And there is such a thing as post-infection inflammation. And even when the inflammation clears, there's sometimes some left over effects from the inflammation because the brain wasn't able to develop normally.

Success10

Thu, Nov 30 2023, 4:54 pm

amother DarkGray wrote:

So it's autoimmune?

amother

Snow

Thu, Nov 30 2023, 5:01 pm

amother OP wrote:

Because it’s very hard to find a doctor who is both well versed in the treatment of pandas, which is very specific and complex, and who is accessible to you (close by and has appt slots) and who either takes your insurance or you can afford to pay (thousands and thousands) out of pocket. Most pediatricians do not know the correct protocol so even if they “treat” it it flares up again. It’s also a stressful treatment process with no clue when it will start working.

Your question is the same as someone asking, “why all the hype about a heart attack?? There’s established protocol for it! Go to a heart surgeon and get a bypass and you will be ok!” I mean technically you’re correct. But medical situations are hard and complex.