Autism and PANS PANDAS with Flyer

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.

22 comments to Autism and PANS PANDAS with Flyer

  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
  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
    • Maria
      October 21, 2020

      Hi my grandson is 7 doctor said he’s suffering panz due to lymes can you please help me find a doctor who can help with this he’s been on antibiotics for years and he won’t sleep alone , he goes from 0 to a 100 he gets so angry he wants to hit you then says he’s sorry … the outburst is getting worse…

      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
  7. Rebecca Jackson
    July 15, 2020

    We live outside of Dallas and our son has had a diagnosis of Autism. He has has had these growing and worsening occurrences of tics (i thought they were seizures) and has severe anxiety as he cries or laughs seemingly for no reason. He is non verbal and has lost his ability to control his bladder. While he has seen a neurologist for his tics we were told he does not have tourettes but these tics almost knock him to the floor.is there anyone out in Plano, Frisco, Allen, Richardson or Dallas Tx we could see who know about Pandas and Pans?

    Reply
    • Gabriella True
      July 20, 2020

      Hi. I’m going to email you.

      Reply
      • Teresa Farley
        July 27, 2020

        My son was diagnosed with autism at 2 years old. He’s now 3, some symptoms have improved but he had numerous ear infections starting at 6 months old and got croup multiple times between 6 months and 3 years of age. He has ear tubes placed in his ears at 2 years old but now I’m a bit concerned that maybe all of those things were overlooked such as the croup and ear infections and all of the antibiotics that he received before getting the tubes placed and then being diagnosed with autism?

        Reply
  8. Radha
    August 21, 2020

    I’m wondering if my son diagnosed eventually with ASD, ADD, DCMD actually has PANS because he had sudden onset of OCD JUST BEFORE AGE 3, abrupt personality change, sudden loss of coordination and then developed TICs which went away when treated with course of antibiotics for a sinus infection. Unfortuanately, although the OCD and some other things improved a bit with the antibiotics, the pediatrician wouldn’t give him more than 10 days and he never improved all the way. He has had a weird course of waxing and waning symptoms and some TICS from time to time (which usually go away with antibiotics) but overall he seems to be losing motor control of his body. He is regressing. His attention is zero. He can barely hear a sentence of a book read to him (he is 7) and understand what it says. Before all this started (age 2), his comprehension was better. Also, he has had all his immunizations, but I noticed distinctly after he received immunizations at age 4, he had a major setback like within days he started having weird movements. His Cunningham Panel was positive – but I was told by one neurologist that the test is meaningless. I’m just so confused and don’t know what to do for him. He has also developed vitiligo. He definitely has a brain that is inflamed and autoimmune disease going on. One neurologist early on diagnosed him with autoimmune encephalitis but said it was improving on its own so no need to do anything. Please help!

    Reply
    • Gabriella True
      August 27, 2020

      We have a list of parent suggested doctors. Please a PANS specialist and/or a integrative MAPS doctor who understands autoiummune, ASD, and PANS PANDAS.

      Reply
  9. Jonatan hernandez
    November 16, 2020

    Hola vivo en amarillo texas mi hijo es diagnosticado con autismo pero no se hizo ningun examen aqui me gustaria hacerle examenes a fondo hasta donde lueda llegar

    Reply

Leave a comment