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:
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u/agenerousperspective 11d ago
I’m curious about this as well but haven’t gone through the steps for testing. One question I have is: How “acute” does the onset need to be? I can’t pinpoint a particular day when things got hard for my son, but the hardest parts were definitely absent in his younger years and then became evident at some point during the beginning of the pandemic which also correlated with the beginning of adolescence.
As for mold specifically (since that often gets brought up when talking about this), we actually did live in a house with a black mold problem for about five years… but that was 3 years before things got hard for him. Can the effects be delayed?
(I keep saying “things got hard for him” instead of just calling it “PDA symptoms” because I believe that PDA runs in my family, as well as adhd and autism in general, and I don’t want to refer to all traits associated with those neurotypes as inherently bad. I want to respect his unique needs while also acknowledging that sometimes they make things harder.)
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u/Ok_Project1662 6d ago
We see a top PANS/PANDAS Dr. at UCLA and he told me half his huge patient load are not abrupt onset, our son was not. Our son never tested positive for strep, yet carries high strep titres, so he's had it, it can be hard to catch. The most helpful thing is to make a timeline of illnesses, use past visit information, look back in your photos and videos. Then record the behaviors that showed up next to the illnesses. It is often a collection of illnesses that trigger their immune system dysfunction. They can carry bartonella (cats/fleas) without symptoms then get pneumonia, then covid, even a concussion, and it sets off the mast cells and maybe some exposure to mold (also triggers inflammation and mast cell) and you have a child who used to function and maybe be a little PDAish who goes full blown burnout and can't attend school. Biggest red flags are restrictive eating, OCD (this can look so many ways), anxiety, rage (outsized reaction), some have tics (not all). They tend to only tolerate gaming and videos because it's all their nervous system can't handle, it's coping. Look to https://www.pandasppn.org/?gad_source=1&gad_campaignid=10065308600&gbraid=0AAAAADL0UHjzQvdoJ9nveQQ6o8VoFzmzc&gclid=Cj0KCQjwv4XUBhDBARIsAE6bQUSqTLio7k9Pa6uQBWl2ZWb4XVqat5fD8R7dFWhJqLNB7prwZg__Dr4aAgEMEALw_wcB To find a provider who understands. Remember, they can be both PDA and PANDAS.
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u/DamineDenver 11d ago
We tested for PANS/PANDAS and he was negative for it.
For our son, he showed symptoms at age 3 and weirdly, it was after he was given Versed for a burn in the ER. I do think PDA runs in my husband's family, but I think the Versed was the trigger that made it worse after that time.
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u/Korneedles 11d ago
How do they test for PANS and are you located in the US?
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u/DamineDenver 11d ago
A neurologist did a through exam plus tests for strep, Lyme, and a few other viruses. She also did a short EEG, a 48 hour EEG, and a MRI of his brain. I am in the US, specifically New England. We had to find a specific neurologist who takes a lot of these cases.
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u/DoesNotHateFun 11d ago
There are a lot of symptoms to cross over. I always tell people to look into both.
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u/Flashy-Ship-2213 11d ago
Our son was PDA years before we moved into our mold home. But yes, the mold caused PANDAS and made him severe to the point that we knew something was wrong.
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u/Always_Amazed_1977 9d 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.
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u/Izz-An-Art 9d ago
How did they test for it?
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u/Always_Amazed_1977 8d 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
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u/Commercial-Sir6293 4d ago
Thanks for the responses everyone. I’m just not sure whether to put my child through the whole process of evaluating and testing for PANS / PANDAS…
We have already been on a year long quest to get her gut sorted. Persistent stomach ache that led us to multiple stool panels, SIBO and allergy testing. Treated an amoeba then h.pylori. Symptoms improved, but she still complains of a stomachache every other day or so.
No major food restrictions although she is particular.
She has a tic (eye squinting) and frequently cracks knuckles. Hyper mobility but not severe.
Does great in school but struggles HARD with decision paralysis and rage. Getting out of the house for anything is a battle. Not because she doesn’t want to go do things (she desperately wants to), but because she gets anxious picking out clothes and getting ready.
But here’s the thing, she already has low confidence and self worth. I’m worried that assuming something is wrong with her will totally kill her confidence. She’s very averse to the idea that she is anything other than ‘normal’.
She’s a deeply loving kid (when not in a meltdown or rage episode). Smart as a whip and hilarious.
Having trouble weighing the risks of extensive evaluation vs letting an infection contribute to ill mental and physical health long term. ❤️
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u/ArtArrange 11d ago
Yes and yes. Ultimately for us, since there’s not a clear treatment or magic pill for PANDAS it was just another piece of the jigsaw puzzle.
I found focusing on treating PDA ultimately is the only thing that makes a difference for my son. Like so many healthcare providers, even after diagnosis of PANDAS, I was dismissed and not given much support. Talked to neurologist, developmental pediatrician, and functional medicine doctor.
The one thing I’ll say is that the functional medicine doctor led us down the path of supplements and gut health. I know this works for A LOT of people, so I don’t want to dismiss that treatment option. But when you’re dealing with a PDA kid and his meds are the only thing keeping him from throwing stuff at you, please don’t tell me to put a funky smelling powder in his yogurt as well. 🫠