Where does pandas disappear to

amother

Olive

Thu, Nov 30 2023, 9:32 pm

amother DarkGray 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!!

How did you know with certainty that it was pandas? What kind of testing did they do to determine that? Genuinely wanted to know thanks.

amother

DarkGray

Thu, Nov 30 2023, 9:41 pm

amother Olive wrote:

How did you know with certainty that it was pandas? What kind of testing did they do to determine that? Genuinely wanted to know thanks.

So we actually started, as I mentioned above, with ruling out all other factors. We took him to behavioral therapists, psychologists, etc. we took many blood tests. In all of them, his strep titers were about 1200 (normal is under 200). That alone isn’t a perfect indicator, but definitely was concerning. Combined with his completely erratic, close to psychotic behavior that came out of the blue, in both home, school , and around friends and family as well. Also he developed vocal tics, ocd behavior, and started bed wetting. He turned from a model student to someone that seemed like a combination of autistic, adhd, socially off, and almost toddler-like. (He was 9 at the time)
He was kind of textbook in this regard. Every expert we saw said they can’t help. They can’t address these behaviors because they were obviously caused by a chemical imbalance, something new, not his regular makeup.
It was completely obvious to his principals, teachers, and even pediatrician.
He also has another autoimmune disease, which is definitely connected.

amother

Olive

Thu, Nov 30 2023, 10:05 pm

amother DarkGray wrote:

Wow poor you and poor him! I can’t imagine going though that. I have a 5yr old dd who was diagnosed with autism but high functioning. She has always exhibited some of these behaviours but things have escalated more recently. From the way it sounds though this seems like your child went from 0-100 really quickly-does it ever present as a slower onset?

amother

DarkGray

Thu, Nov 30 2023, 10:28 pm

amother Olive wrote:

I’m sure it does. Every person reacts differently. From my experience, it can’t hurt to at least check. I can’t even tell you the relief I felt when I realized we could just treat him!! I feel like crying just remembering it, it was such a rollercoaster

amother

Begonia

Thu, Nov 30 2023, 11:13 pm

amother Yellow wrote:

I'm also finding myself wishing OP experiences this personally so she can come off her high horse....

OP you've caused a lot of people pain with your callousness.

I can understand where you are coming from.
Becuase I also have a child with PANS.
(Similar to pandas. But caused by a different bacteria)

But please remember, this is a yiddish kind.
Hashem should give her the seichel to know that she cannot understand what this us all about. Rather than chv feel it herself.

Having said that, unfortunately, life has taught me that oftentimes, when you judge someone else, hashem will humble you in just that way.... it was a very bitter pill to swallow, and currently am swallowing every day at the moment.

Op, please rethink your behavior. I don't want you to suffer what we did.

amother

Viola

Thu, Nov 30 2023, 11:42 pm

I think OP believes pandas is real when it's sudden and severe. And she believes in long term antibiotics as a treatment.

She objects to it being applied in cases where there was no sudden onset, or the symptoms don't match the exact list, or they're not as extreme as what's being described on this thread. Or when it doesn't respond to antibiotics. In other words, when it's not a textbook case.

amother

Milk

Thu, Nov 30 2023, 11:45 pm

amother Viola wrote:

Which makes perfect sense.

amother

Begonia

Thu, Nov 30 2023, 11:51 pm

amother Viola wrote:

She doesn't have to.
She just has to be smart enough not to judge.
My child was not a textbook case. It took 6 pediatricians and many years for a doctor to actually listen.
Bh they one finally did.
I knew something isn't right before I even knew about pans/pandas. When u read about it, I was like "bingo"!!! I knew it was that. And I knew it wasn't typical onset. But it HAD to he that. That was the only explanation.
The only proof I have that it was PANS is that my child had healed thru treatment.

amother

Viola

Thu, Nov 30 2023, 11:54 pm

amother Begonia wrote:

I agree with you. I'm just explaining for the posters that keep writing about their children who suddenly started acting bizarre that OP doesn't mean them.

She means posters like me who will suggest pandas to OPs saying their kids struggle socially, or are very argumentative, or constantly picking fights with siblings, are picky eaters, compulsive nail biters, Sensory issues etc and then will recommend they treat with herbs, homeopathy and craniosacral therapy.

amother

Moonstone

Tue, Dec 26 2023, 8:15 pm

amother Broom wrote:

This thread is painful to read. I have multiple children with Pandas/autoimmune encephalitis. Big family history of autoimmune disease. In fact, this isn't their only autoimmune disease.
They are being treated with monthly ivig, with known neurologists.
This isn't quackery and a pediatrician like dr. Shulman didn't have all the tools a neurologist has to test and treat.
The markers that a doctor should look for in a suspected pandas case besides strep markers, are autoimmune markers, cytokine panels, inflammatory markers panel, immune system panel, as well high blood titers to infections and viruses like lyme/hhv6/mycoplasma/covid rtc..etc.
Depending on severity, they would also do an eeg, lumbar puncture, mri etc...(all of which I did with multiple children).
It is indecent to post that pandas/autoimmune encephalitis is all hogwash.
This is the type of gaslighting that is happening all over the medical community and why I waited for many years for my second child to be approved for ivig because Insurance won't approve it if it's written as pandas. You need another diagnosis.
Never mind that in certain states, it is illegal for insurance to deny ivig or any medical treatments for pandas as a diagnosis. Never mind that it is has its own insurance code etc...
The years wasted by my child suffering immeasurably can never be replaced.
I myself can't visit a doctor anymore due to all the gaslighting I experienced over the years.
Please just lock this thread.
It hurts. It really really does. And I hope none of you ever experience the sudden change of an 8 year old child threatening to kill themselves, forgetting how to read and write and having childhood anorexia with lots of other symptoms. And seeing the healing power of the right treatment...

Another broom, where can I learn more about pandas/autoimmune encephalitis and do you have a good doctor in the NY area? My child is a teenager and symptoms are not classic pandas, but seem closer to what I have read about autoimmune encephalitis. Do there need to be neurological symptoms like seizures for it to be autoimmune encephalitis?