Parents Open Up About Son’s Battle With PANDAS Syndrome | Steph’s Packed Lunch

[@RisingTidesAC]

My heart melted when his sister held his hand!

[@nr6916]

This poor boy, I felt for him. I had this as well and it’s just as scary as it sounds. I don’t think people realize that it’s not only hard for the parents, it’s especially hard for the kid. For me, to listen to my mom describe my conditions to coworkers and doctors so casually was always so hard because all you can remember is the dark dark tunnel of pain during that time period and was something I wanted to put behind me, not keep bringing up

[@terriergal]

What are the odds that some (not all) other seeming mental health issues are neurological issues that could be caused by an autoimmune problem in adults, and they are just misdiagnosed because adults have a bit different way of acting out these impulses? Or if a subclinical autoimmune reaction could cause something like unexplained anxiety/panic attacks and depression?

[@olliedjones]

Quite possible

[@sofab16]

I know a number of people who where misdiagnosed with mental illness when they actually had Lyme disease & other tick borne infections (musician Ren is a famous example). I have had many issues due to toxic mould exposure but the NHS isn't aware of that condition so I have been repeatedly dismissed, told I have anxiety and ME/CFS and not given any help. We're not mad: our brains are literally inflamed. The medical system needs to do better in including these conditions in their differential diagnoses, not just dismissing us as mental patients when the root cause is not obvious to them.

[@nml5802]

Multiple kids affected in my family of 6. They were children with sudden, late childhood, mystifying onsets with OCD, phobias, situational mutism, social anxiety, sensory, vocal tics, eating disorder, school phobia, etc in the 90’s. 3 still struggling as adults. Along with strep, we have also fished around in the lupus-like, encephalitis, connective tissue EDS, PDD-NOS, non verbal learning disorder, allergy/ asthma/immunology, mono/ EBV/chronic fatigue, realms.

[@jaderowe7749]

It’s already quite known that infections can trigger mental health problems, so you’re not far off.

[@traceyhilder6640]

Great that dr Ubhi is on sharing what he knows best my daugher has pans panda plus due to it not been treated she got POTs over 11 years of doctors consultants she’s suffered so bringing awareness to health professionals plus schools everyone should know of the profound effects it causes thanks for sharing your story great little jack has had good response to treatment

[@krystiankosowski4617]

Actually we are facing Pandas, trip to hell and back, suddenly we are fighting with NHS for treatment and support, for all parents facing it now, hold strong and and fight for your child, for people who's want to know what is exactly is, video stolen childhood on youtube

[@samuelcarnall309]

Quite irresponsible for C4 not to mention that PANDAS controversial, isn't properly recognised, doesn't have established diagnostic criteria, and that the treatments have serious adverse effects...

[@michaelholmes924]

Only because the medical community is far behind on this one (and the wikipedia is also behind). It takes an average of 17 years for scientific research to trickle down into clinical practice. Autoimmune encephalitis is already widely accepted in the medical comminunity but there has been a strange stigma against PANS/PANDAS perhaps because of its difficulty to diagnose. Some mechanics of the disease are still under investigation, but it is already been proven real by clinical and lab study. Dont take my word for it, look up the studies from Yale, Columbia, Stanford, NIMH etc www.ncbi.nlm.nih.gov/pmc/articles/PMC10225150/

[@dollyshisler-farias2775]

Vaccines

[@charlottecomfort2446]

🎯

[@terriergal]

Vaccines don’t cause this.

[@Anne--Marie]

How about blaming the toxins in our water, food and air instead of blaming medicines?

[@natscat4752]

How about blaming the strep infection mentioned in the interview!

[@Blu3b3rrymuffinn]

@@natscat4752 exactly