Where does pandas disappear to

amother

Vermilion

Thu, Nov 30 2023, 5:42 pm

amother OP wrote:

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.

Whats upsetting to me is how you clearly have no idea what you're talking about.
Repeating one conversation you one time had with Dr Shulman doesn't mean you know what you're talking about. Your initial op proves this as none of your statements make any sense to anyone who's actually lived through and experienced pandas.
I have no patience to either pick apart or educate you, some other nice people did that, but I will call out the misinformation and super haughty gaslighting you're doing here.

amother

DarkGray

Thu, Nov 30 2023, 5:50 pm

amother Vermilion wrote:

Thanks for putting this into words. She was not nicely asking for what she didn’t know. She clearly wasn’t well educated and obviously never went through this excruciating chapter with a child. Instead she was flippantly gaslighting.
OP, you would have gotten very different responses had you asked as someone who was willing to learn. Instead you took many people’s lived experiences and completely demeaned them, with zero basis
It’s obvious you didn’t know what you were saying and that you never lived through it
I think I and many other posters gave you pretty clear answers.
May this never ever apply to you, along with the many other illnesses and problems that can be experienced with children.

amother

Viola

Thu, Nov 30 2023, 5:57 pm

amother OP wrote:

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".

I know someone who was "successfully" treated by Dr Shulman years ago and she still has tics as an adult.

Wadr to Dr Shulman, and she was a pioneer in pandas research, the science has moved on from her days. We understand so much more about chronic infections, autoimmunity and brain inflammation today than we did 20-30 years ago. Long term antibiotics can still be an important tool for some, but its not the be all and end all in terms of treatment. The reason it's so complex in very short, is because it's autoimmune. And autoimmunity is extremely hard to reverse.

What we see in bloodwork is neither strep, nor pandas. We see strep antibodies, which could mean a number of things. Someone could have pandas with normal antibody levels, and someone could have high antibody levels and no pandas. Which is why strep titers are not a diagnostic tool when it comes to pandas. In fact, there is no test that can rule it in or out.

amother

Mimosa

Thu, Nov 30 2023, 5:58 pm

amother Viola wrote:

I know lots of adults with [untreated] pandas, myself included. It looks like all forms of anxiety, ocd both classic and more subtle including intrusive thoughts, rigidity, black and white thinking etc, difficulty with emotional regulation, rage, executive dysfunction and more.

I choose to believe my child has pandas because their behaviors respond dramatically and unequivocally to treatments that target infections and inflammation. And treating the root causes gives us the best chance at true healing.

I have all of the above you listed and prob more but I blamed it on childhood trauma,,,,

(Yes, it tends to run in families).

amother

Vermilion

Thu, Nov 30 2023, 6:00 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.

Contrary to popular belief it actually doesn't have to start overnight
Also it could be that you missed the initial onset bc you blamed it on schedule, weather, transition etc
But in hindsight if you can say, my kid wasn't born like this but started acting like this at a certain point... that also qualifies as acute onset

For the record I'm extremely well versed in trauma and there's no comparison in pandas behaviors. You can't possibly look at a pandas kid and determine that this kid is acting this way bc they went through a trauma. Not if you know what you're talking about. A pandas child is literally insane and psychotic.

amother

Broom

Thu, Nov 30 2023, 6:29 pm

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...

amother

Mimosa

Thu, Nov 30 2023, 6:36 pm

amother Broom wrote:

would a regular cbc show any indication?

amother

Thu, Nov 30 2023, 6:59 pm

I think I'm going to believe my doctors that I know and trust over some people who are now experts because they decided they can now pick it out in any child since it's what they determined their child's behaviors are.

Just a word of warning, I know someone who has 3 "pandas" kids, she ran from doctor to doctor, and got them approved for ivig. Her kids turned 18+ recently all have moved to another state and are not in touch with their mother. They feel she should have pursued other avenues and gotten them actual help. They now have to confront their mental issues and other issues that never went away because they needed other help.

She is like you on social media always saying it's pandas without a doubt. All I want to do is bring awareness to those that might be looking for answers. They should look everywhere not feel pushed into believing pandas is the only possible answer out there.

And if you kid is acting insane like some said, they likely need meds for psychological issues as hard as that is to accept. Get them the medicine because they will just go get it themselves as adults and they will resent you for it.

amother

Vermilion

Thu, Nov 30 2023, 7:11 pm

amother OP wrote:

Literally nothing in your post is about awareness

Nobody ever says "it's pandas to the exclusion of anything else". You made up this story and you're running with it

Sorry you know one crazy lady in your life but it takes one to know one

[Parting "bracha" removed. - mod]

amother

Broom

Thu, Nov 30 2023, 7:37 pm

amother OP wrote:

How dare you!! How dare you!! You have no clue if and when my kid was on the so called meds that you purport to know for a fact would work on our child's psychosis. You have no clue what was tried or not. You have no clue how much money is spent on psychiatrists and psychologists...Don't you think I would rather my child be healed with some magic pills than monthly iv treatments? (never mind that psychiatrists have ZERO bloodtests to tests for these so called serotonin and dopamine levels that these meds "help". And real pandas/autoimmune encephalitis most DEFINITELY does have physical evidence, never mind that the latest research in mental health at all the research universities are pointing to and proving an autoimmune/autoinflammatory component to most mental health diagnosis, https://www.washingtonpost.com.....atry/)
Also, are you a doctor or is your doctor a neurologist/rheumatologist/research scientist etc?
How would you feel if cv you were sick with lots of random symptoms and your doctor and all your friends poo poo it, say it's anxiety, psychological, stress and in the end it's a thyroid issue (easily treatable), or pneumonia (can cause shortness of breath, feeling panicky etc and also easily treatable) or any other real diagnosis that only takes a non egotistical doctor to actually listen to you and be a detective?
The gaslighting here is BAD.
I'm reporting this thread and please lock this thread...

amother

DarkGray

Thu, Nov 30 2023, 7:53 pm

amother OP wrote:

Ok, you decided to completely skip over every single post where people with experience who literally went through hell and back explained what it was. You still have no concept of what you’re saying, and no experience. You also have NO idea what other mothers have pursued. And I believe almost everyone who responded to you said that they explored every other avenue!!
A psychiatrist and a therapist can not treat behavior that is caused by inflammation!
You literally disgust me. I’ll be honest. You couldn’t care less about facts, you couldn’t care less about people who, I GUARANTEE you, did more research with more skin in the game than you. I’ll say it again, I am nauseated by your post.

amother

Cerise

Thu, Nov 30 2023, 8:43 pm

amother Viola wrote:

Wow this is so validating! Can I still be healed ?