PANDAS/PANS and Autism: The Need to Knows

Today, I'd like to talk to you about PANDAS and PANS, and how it might relate to children with autism.
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[@stephaniehardesty9002]

My son has pandas and was diagnosed him 5th grade. He has been on rounds of antibiotics so now he has an invasive fungal infection...please watch putting your child on all those antibiotics. He is 18 now and very sick. We are using probiotics and antifungals to get him back to normal. Make sure you give your children the good bacteria after antibiotics.

[@marybarbera]

Thanks for sharing.

[@desserteyes6978]

Do antifungals and antibiotics and get a fecal transplant you can pay $12,000 in Mexico or $200 from Microbioma. Antibiotics are a no. Try to buy breast milk for igv A get the heavy metals out. Treat parasites viruses bacteria as natural as possible

[@HungaryEye]

👉kzbin.info/www/bejne/m6LHoJJ4j8iYf5I

[@sheilamulvihill5503]

Hello Mary, My son has ASD some of the symptoms with pans/pandas seem similar with asd. How does one differentiate if it’s asd or pans/pandas?

[@marybarbera]

google mary barbera pandas for a new podcast i did on the topic that will help.

[@Stalemarshmallow]

Hi Mary. I suspect this in one of my clients. I’m going to bring it up to the BCBA tomorrow. Thank you

[@marybarbera]

Thanks for sharing! Let us know how it goes

[@phoenixlu]

Do you have any suggestions or information on how to go about getting evaluated/diagnosed with ASD with a preexisting PANDAS diagnosis? I was diagnosed with PANDAS when I was younger, received IVIG, and have since had much milder symptoms that do occasionally flare. Before being officially diagnosed, doctors were unsure if my severe symptoms and behaviors were related to Autism. Now that I'm older, and have a better handle on my PANDAS symptoms, I still wonder if maybe an ASD diagnosis would help explain some things.

[@marybarbera]

Google mary barbera PANDAS as I do have a podcast with a mom whose child was diagnosed with, and treated for PANDAS.

[@Sehara]

My son started having problems and ticks at the age of 8. I tried to find out what is going on, visited every neurologist in the state, put him even in a psychiatric hospital for 10 days...nobody could give me an answer. He is 25 now, ticks are still present, his personality changed, he got many diagnosis, OCD, DEPRESSION, PTSD...cant name all of them and was told he was born this way. He tried to commit suicide many times. Your description about ticks is almost the same. It started by clearing his throat, then pulling out the tongue, then arm, then head jerking...he was tired and in pain from it. His ticks are now less but still present and I finally got some answers, I am sure he has PANS. BUT CAN ANYONE HELP? Is it too late for him? He was a bright intelligent boy and I know deep in his hart he is good but his behavior is terrible. Please somebody give me hope. Thank you.

[@marybarbera]

Thank you for sharing your struggle and story. While we can’t resolve complex needs in comment responses, we can point you to a Free online Workshop many Pandas/Pans parents have found helpful: marybarbera.com/bundle-ws.

[@Sehara]

Mary Barbera - Turn Autism Around thank you! 😘

[@SueSue-mp2iu]

Sehara : there is hope. It doesn’t matter how long he has been sick. Please refer to : PMCID: PMC4340509. Sorry I can’t get the link to work- but google the Publication number I gave above and the article will pop up. You can contact me at [e-mail]. Put PANDAS mom in the subject box

[@martjnhauser6053]

Ik heb een neef met goed functionerend autisme, hij is zeven jaar oud. En in de maanden dat ik in Brazilië was, ontmoette ik een 25-jarige jongen, ook met goed functionerend autisme, maar ik denk dat hij eigenlijk PANDAS heeft, vanwege roodheid in zijn gewrichten, hij heeft de lichaamstemperatuur, tachycardie, hypertensie en ademhalingsproblemen! Ik maak me zorgen als deze 25-jarige echt PANDAS en hartaandoeningen heeft, hij heeft een kort leven!

[@martjnhauser6053]

@@marybarbera I have a nephew with high functioning autism, he's seven years old. And in the months I was in Brazil, I met a 25-year-old boy, also with high-functioning autism, but I think he actually has PANDAS, due to redness in his joints, he has elevated body temperature, tachycardia, hypertension and trouble breathing! I worry if this 25-year-old really has PANDAS and heart disease, he has a short life!

[@134Ankit]

Excellent information.. Thanks so much for putting up... God bless you..

[@marybarbera]

Thank you so much for your support!

[@vaibhavnaik12]

Is facial tics also part of PANDAS. my son is 3 years old and having ASD and he frequently lifts his nose.

[@drewway9599]

PANDAS survivor here. PANDAS is very much tics in general - they don't have to be specific ((AND/OR)) OCD. In my case and in other's cases, thoughts get cloudy and mood worsens severly. If you suspect he might have PANDAS, PLEASE take him to the neurologist as it is a form of rheumatic fever. PANDAS doesn't have to be associated with autism as well, myself and others don't have autism at all. www.nimh.nih.gov/health/publications/pandas/index.shtml

[@vaibhavnaik12]

@@drewway9599 but is facial tics is a symptoms of PANDAS?

[@drewway9599]

vaibhav naik all tics are, but that doesn’t mean he has PANDAS. Many people have tics, and it’s usually nothing to worry about :)

[@SueSue-mp2iu]

vaibhav naik : yes the nose lifting and mouth tics and constant eye blinking

[@ZoeyAlexandria]

Yep. I’m an adult who just got diagnosed with it a little over a year ago. Facial tics especially around the nose and mouth and even the eyes seem to be pretty common.

[@martjnhauser6053]

Is PANDAS syndrome a form of acquired autism? Does he usually show brain inflammation on MRIs or skull scans?

[@marybarbera]

PANDAS is not a form of aquired autism. I do not believe a brain scan shows inflammation. More information on PANDAS can be found here www.nimh.nih.gov/health/publications/pandas/index.shtml

[@DarkAngel-cj6sx]

Maybe that is what my 3.5 years old has. He was developing very well and suddenly stopped communicating with words

[@marybarbera]

That is troubling

[@birjagan3912]

Hello Mary, your video is so informative. My son is 2.5 years old, he started loud noises over 3 days, he is diagnosed with ASD , i have noticed little red bumps on his legs, we thought its because of ants’ bitten as our backyard is full of them. Do you think that could be PANS. Moreover us is this kind of autoimmune genetic in nature. I suffered from chronic autoimmune condition myself.

[@marybarbera]

It is hard to say but it may be best to find a doctor or functional medicine practitioner.

[@paulinebrus7580]

great video! I am learning about this and wondering if both my kids have PANS or PANDAS because both had sudden changes. Son extreem ticks and daughter extreem panic and OCD. But I do not remember if that happend after an infection. These Changes has happend 3 and 5 years ago. hard to recall. Is there a way to test for virussus and bacteria in the body after years? Or something? ;)

[@marybarbera]

This might help: marybarbera.com/pandas-disease-and-autism/

[@paulinebrus7580]

@@marybarbera thank you :)

[@halimaahmedova9987]

Türkce baxmaq ısterım

[@elizabethtaylor3994]

My daughter got strep and then developed Type 1 Diabetes. I have always felt there was a connection. Her doctor did as well. The other thing that struck me is the mosquito bite legs you spoke about. My daughter would look eaten up no matter what I did. When ever she was on an antibiotic the legs would start to clear. I just feel somehow there may be a connection to how these things happen and auto immune. I don't know because this is the first time I've ever heard of this but I had to comment on it.

[@marybarbera]

Thank you for watching and sharing your experiences.

[@marcosantana4977]

eeptolisina ,uma toxina de estrepto vem sendo utilizada em modelos de ratos para induzir diabetes ,azul de metileno e imunoterapia tem sido util nesses casos

[@Doofus171]

Mosquito bite legs ... perhaps its mild scarlet fever (aka group A strep)

[@desserteyes6978]

Vaccines antibiotics and steroids and junk food destroying our children’s immune system.

[@DarkAngel-cj6sx]

Mine was developing very well and suddenly stopped talking at almost 3.5 years old. He makes loud noise and talks in a made up language none srop. He has some mosquito bites behind his ears and he is always touching it as if something was inside bothering him. He will have his ear checked next month

[@marybarbera]

That sounds very difficult.

[@israelandfriendst8247]

If you read this message, which I hope you will, my son had a similar problem. Buy water, pH .8-9 leave it in sunlight for a month by lots of bottles of water and leave it in sunlight and only allow him to drink those bottles of water and that should help him greatly. Also buy him organic fruits and organic vegetables and give him to eat. give him extra vitamin D as well. You can buy real organic honey natural honey twice a week you give it to him to eat to spoons. You can add a little fresh coconut water water.

[@carasmith8088]

i had pandas it was horid i hope no one has to go thru it thanks to the doks that work at co,springs chidrens hospital

[@marybarbera]

Thank you for sharing, i'm sorry you had to go through that.

[@kristylinzie7550]

I am having a hard time finding someone to diagnose my daughter with pans. She has all the symptoms. Do u know who to go to?

[@marybarbera]

Check for a local Pandas/Pans Facebook group in your area for recommendations

[@drewway9599]

It's pretty hard. I have every single symptom of PANDAS and only after mentioning it to my neurologist and her researching it was I diagnosed with it.

[@dignal8399]

I heard It is really expensive

[@Elaine_S]

Cunningham Panel tests for it. $925 for the test. Not sure yet how much the lab will charge to draw it. Once my son with adhd gets better we are taking him and his brother with ASD in to be drawn for it.

[@scarletsummer3526]

Wish I knew you when my daughter was screaming ALL in Day and this was echoing in her ears...we got No help back in the day and my daughter never got quite over it. She is an adult now and still afflicted. No treatment ever. Our family was ravaged from screaming all day for years and the doc said NO to a psyche ward.. which is better because of creepy predators... But it wasn't hard and impossible...to deal with.

[@marybarbera]

I'm so sorry to hear that your daughter and family went through this without much help.

[@Your-Boi-Shane]

How did you get the diagnosis?

[@marybarbera]

You should contact your doctor or functional medicine provider .

[@horselover7216]

Could i have this? I'm bed bound and desperately trying to find out what's wrong. I have ehlers danlos syndrome (eds) and i have had severe back and head pain for years. I'm constantly having to turn over due to back pain. Also my neck got locked in one position and has been stiff ever since. Often i find that my back wants to lay one way and my neck wants me to lay the other. I also have had severe sickness and have had to be taking anti sickness ever since i got d&v. Ive hit my head several times and have had concussion. I have audit and visual hallucinations and eye sight issues. Dizziness. I have had stuff run down my throat causingvit to feel blocked for years. Sudden behavioral issues/ changes. I now can't even sit up or keep my neck up straight. Now i can't sit up without lower back pain and sickness. Agitation. Numbness in hands and legs. Can't feel pain. Sensitive to light. Memory issues. Panic attacks. Can't feel emotions, yet with a flick of a switch, I'm angry or crying. I have no idea why after. Aggression. Anorexia. Depression. Autism. Virtigo. Brain saps. Not responding to pain meds and i can't have morphine as that doesn't work and makes me sick. Nothing works. Normal mri and blood tests testing for antibodies. Frequent infections. Resistant to most antibiotics now. Also i have constant ringing in my ears. Also I've had a really bad ear infection, where i lost my taste buds and sense of smell. I've lost my taste buds now and sense of smell. Also, i had urinary problems growing up and found that as soon as i laughed or bounced on my trampoline, I'd end up going. It was very embarrassing and i had to take this little blue tablet to help (can't remember what it was called) My neurologist has diagnosed me with FND but i disagree! I'm aware that not all my symptoms are relivent, but i thought I'd add everything

[@marybarbera]

I am not a doctor so i'm not sure if you have it but there are PANS and PANDAS specialists that can be found by searching on google.

[@horselover7216]

@@marybarbera okay