Autism and PANS PANDAS

PANS/PANDAS patients are commonly misdiagnosed with Autism, Tourette’s Syndrome, OCD, bipolar disorder, ADHD, Oppositional Defiance, or with an eating disorder. However, PANS/PANDAS patients can have co-occurring conditions of Autism, ADHD, autoimmune illnesses, immunodeficiencies, and more.

  • 1 in 54 children are estimated to have been diagnosed with Autism.
  • 1 in 200 children are estimated to have PANS/PANDAS.
  • One can have a dual diagnosis of PANS/PANDAS and Autism.
  • One can be misdiagnosed with Autism but actually have PANS/PANDAS.
  • In ASD, boys were more than 4 times as likely to be identified than girls.
  • In PANS/PANDAS, boys outnumber girls approximately 2 to 1.
  • No child should ever be denied proper evaluation for PANS/PANDAS just because they have Autism or another diagnosis.
  • If a child has sudden regressive Autism, they should be evaluated for PANS/PANDAS.
  • If a child has sudden worsening of symptoms associated with Autism, they should be evaluated for PANS/PANDAS.
  • If a child with Autism has new behaviors or symptoms that correspond to the PANS/PANDAS diagnostic criteria, they should be evaluated for PANS/PANDAS.
  • A child with Autism can have OCD without having PANS/PANDAS.

“PANS and PANDAS are sometimes misdiagnosed as OCD, Tourette’s syndrome, autism spectrum disorder (ASD), ADHD, anorexia, and other psychiatric disorders. The presence of obsessive rituals and interests, rigidity around routines, and impaired eye contact may be confused with ASD in young children. Pediatricians should consider the possibility of PANS and PANDAS for any child who presents with sudden changes in behavior or mood.” Casoli Reardon, MD, MCPAP Medical Director and Pediatric Liaison, MGH for Children at North Shore Medical Center.

“PANDAS may be more difficult to recognize in a child with autism – due to overlapping symptoms. Or it may be mistaken for classic OCD, which commonly co-occurs with autism. What distinguishes PANDAS from autism symptoms or classic OCD is the sudden onset of symptoms. As mentioned, this can include new anxieties and compulsive behaviors. Importantly, these symptoms are often accompanied by some tell-tale symptoms not usually seen with classic OCD. These include sleep difficulties, loss of bladder control, behavioral regression and loss of appetite. As we mentioned, many children with PANDAS also develop odd movements (e.g. tics), become irritable and moody or become noticeably more sensitive to loud noises or other stimuli.” – Sue Swedo, MD.

13 comments to Autism and PANS PANDAS

  1. Kathy
    April 2, 2020

    I live in New York. My daughters psychiatrist believes she has Pandas. Where can I find a Doctor in NY that takes insurance to help me have her tested? She had severe ear infections growing up. She has many tics. She also has severe ocd, anxiety; mood swings, outrageous thoughts. She ended up with anorexia. Any help would be grately appreciated. Thank you

    Reply
    • Gabriella True
      April 3, 2020

      Hi Kathy, I have emailed you.

      Reply
  2. Staci Shortell
    April 3, 2020

    Has anyone seen this after Lyme disease? My daughter was diagnosed with Lyme disease 3 years ago. She was just diagnosed with autism at the age of 21. Thank you, Staci

    Reply
    • Gabriella True
      April 3, 2020

      Hi Staci, I have emailed you.

      Reply
    • Michele
      April 27, 2020

      Staci, had she had any signs of autism before the diagnosis?

      Reply
  3. Julie
    April 29, 2020

    I’m in Pennsylvania/ outside of Philadelphia and can’t find a doctor to treat test. They all say she has it but only mention IVIG and how it’s thousands of dollars. Need guidance of who to c and how to treat. Thank you!!

    Reply
    • Gabriella True
      May 1, 2020

      Hi Julie, Sent you an email. Gabriella

      Reply
  4. Grace
    April 30, 2020

    My daughter was diagnosed with autism simply because the Dr. said he didn’t believe in PANS/PANDAS. I live in Montana. Do you have information that I can use to get her tested? The speech therapist we see let me take the Cunningham Panel Test and she had most of the symptoms.
    Thank you, Grace

    Reply
    • Gabriella True
      May 1, 2020

      Grace, I have emailed you, Gabriella

      Reply
  5. Heather
    June 22, 2020

    My daughter presently is hospitalized for severe behaviors. She is 17 presently, and was diagnosed 2 yrs ago with P/P. She has had a dx of autism since fifth grade, ocd, bipolar is the new one, mood instability and the list goes on. She has several autoimmune issues to start with and also has had physical abuse and sexual assault happen on different occasions in both school settings and in a residential placement before the P/P diagnosis. She is complex and the P/P doctor we started with seemed to be overwhelmed and not want to treat after she had a suicide attempt. Those now come about to get to the hospital when flares start. Became learned escape behavior. Looking for a good P/P doctor or suggestions. Unfortunately many are out of pocket and unaffordable for us. She has about 20 psych meds she can’t take because everyone wants to treat her as bipolar and I don’t believe it. We really don’t have docs that believe in P/P. We are in PA.

    Reply
    • Gabriella True
      June 23, 2020

      Hi Heather, We have emailed you separately.

      Reply
  6. Crystal
    June 23, 2020

    My son was diagnosed with autism at 2 years old. He had a bought of suspected reaction to antibiotics, but the rash looked like scarlet fever. Are there any locations near Boston MA that test for pandas?

    Reply
    • Gabriella True
      June 25, 2020

      Hi. We have a list of providers on the website recommended by parents. Families and patients need to research doctors near and far to see which is the best fit for their case. We have also emailed you separately. https://aspire.care/treating-pans/find-a-provider/

      Reply

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