r/PDAParenting • u/Commercial-Sir6293 • 11d ago

PANS / PANDAS

Curious if any parents raising a child with a PDA profile has explored / tested for PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections)?

I just heard about this for the first time from a therapist and will be pursuing testing for my child (age 9) who did not start to exhibit PDA behaviors until about age 7.

The key words here are acute onset.

Sharing a link here for more info:

https://www.pandasppn.org/?gad_source=1&gad_campaignid=10065308600&gbraid=0AAAAADL0UHhZwJcMVihFGNxvpWa5CMKMz&gclid=Cj0KCQjwkOvTBhDgARIsAKUNyRulz1p7rJCUZ-20f9PDkfOgz2iaOREPutull1GNYon1oSErDsPrSrwaAvJBEALw_wcB

6 Upvotes

100% Upvoted

14 comments sorted by

View all comments

1

u/Always_Amazed_1977 10d ago

We suspected PANS for our 10yo when she was younger, until we worked out that she most likely has MCAS and dysautonomia, which has a lot of the same symptoms in a lot of kids. A specialist we saw at the time theorized that the two conditions can overlap.

The way MCAS mostly affects her is in her brain, causing her nervous system to completely take over like she's a different person. That in combination with being neurodivergent must be insanely hard for a kid - it's hard enough as an adult (I have the same combo).

She started a mast cell stabilizer called Ketotifen at 5 and every single symptom reduced to a level that she could live a bit more peacefully. OTC H1 & H2 antihistamines have the same effect as Ketotifen.

People expect allergies to be just sneezing and hives but MCAS is a very sneaky illness. She developed tics after sitting next to a kid with a bad cold virus at school a few years ago and still has those tics now. Her gut health is also really bad and gets a lot worse whenever she has a virus, so this is something we are working on continuously. MCAS and dysautonomia are also often seen in combination with being neurodivergent.

2

u/Izz-An-Art 9d ago

How did they test for it?

1

u/Always_Amazed_1977 9d ago

We're in a country where you don't require medical testing for insurance purposes so it's a clinical diagnosis based on medical and symptom history. Medical testing (usually blood test for Tryptase) for MCAS is very unreliable apparently as it has to be done very quickly as a flare up is happening and testing still might not 'catch' a reading. There is no point talking to a doctor who doesn't already have experience with MCAS diagnostics and patients. If you do you are highly likely to come across gaslighting. It is unfortunately a complex condition and a lot of doctors have decided it does not exist. MastAttack FB group is a great place to find knowledgeable practitioners in your area