What is PANDAS?

Blog-What is PANDAS

For the first 4 years of his life, Eric was a fun-loving kid who loved to play catch with his dad and build things with his Legos. When Eric turned 5, though, something changed. All of a sudden, he would fly into a rage, smashing his Legos and throwing his toys at his dad. The young boy also developed a strange tic—jerking his head to one side and shrugging his shoulders. His parents were at a loss. What had happened to their sweet little boy?

They took Eric to a psychiatrist, which led to a long journey and a laundry list of diagnoses—ADHD, oppositional defiant disorder (ODD), obsessive compulsive disorder (OCD), and more. By the time they brought Eric to Amen Clinics, the boy had been to 6 different doctors and was taking multiple medications. But they weren’t working.

After a full evaluation at Amen Clinics, which includes brain SPECT imaging, lab work, and neuropsychological assessments, a different diagnosis emerged—PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections), which is considered a subset of PANS (pediatric autoimmune neuropsychiatric syndrome). Still considered controversial in traditional medicine, PANS/PANDAS are very real conditions linked to infections that lead to harmful changes in the brain.

Controversial in traditional medicine, PANS/PANDAS are real conditions linked to infections that cause harmful brain changes. Click To Tweet

“This is not likely going to be on the radar screen of most mental health doctors and yet it’s a huge problem for the person with it because they’re likely to be misdiagnosed, drugged, or even hospitalized,” says physician Marc Filidei, DO, Director of Integrative Medicine at Amen Clinics.

THE BASICS ABOUT PANS/PANDAS

PANS/PANDAS, which affects an estimated 1 in 200 children, is believed to occur when an infection triggers a misdirected immune response that results in inflammation on a child’s brain. In the early days of research on this condition, experts focused specifically on strep infections as a trigger that attacked areas in the front part of the brain.

Now, scientists have broadened their investigations and found that many different types of infections may attack the brain and lead to a variety of neuropsychiatric problems. Some of the bacterial or viral infections associated with PANS/PANDAS include:

  • Strep
  • Lyme disease
  • Mycoplasma pneumoniae (walking pneumonia)
  • Mononucleosis
  • Epstein Barr virus

These infections are believed to cross the blood-brain barrier to attack brain tissue. New research shows that PANS/PANDAS tends to impact the basal ganglia of the brain. These large structures deep in the brain are involved in habit formation. According to Dr. Filidei, “If your body is attacking your brain, you can have dramatic problems.” In a video on PANDAS and PANS with Dr. Filidei, he adds, “Personally, I think this goes far beyond kids with OCD. I think there’s a very high likelihood that this same process is going on with a lot of mental health conditions.”

In the young boy Eric’s case, his sudden behavioral changes stemmed from a strep infection when he was 5 years old.

COMMON SYMPTOMS OF PANS AND PANDAS

The hallmark trait for PANS/PANDAS is sudden acute and debilitating onset of neuropsychiatric symptoms. These life-changing issues may include:

These acute and severe emotional and behavioral changes often don’t go away. They are not temporary. They can stick around.

TESTING FOR PANS/PANDAS

When diagnosing these conditions, functional brain SPECT imaging as well as lab work can be invaluable. On SPECT scans, overall decreased blood flow or a pattern called scalloping are signs of a potential infection. Seeing these patterns on brain scans prompts Amen Clinics physicians to investigate further to determine if underlying infections may be the root cause of a child’s condition. In this case, blood tests for common viral and bacterial infections can be very helpful.

CAN PANS/PANDAS BE TREATED?

The good news is there are treatments that can be effective for PANS/PANDAS. Getting a proper diagnosis is key to finding the right treatment plan. Treating the underlying infection is a critical step in the process. Other treatment methods include plasmapheresis and intravenous immunoglobulin (IVIG), which was shown to be effective in the treatment of PANDAS in a 2015 study in the Journal of Child and Adolescent Psychopharmacology. Natural therapies may include changes in diet, reducing exposure to environmental toxins, and learning stress-management techniques.

For Eric, treating the infections, improving his diet and gut health, and other treatment strategies were beneficial and helped him return to being the kind, loving youngster his parents knew he could be.

The sudden acute onset of neuropsychiatric issues like OCD, anxiety, or aggression can’t wait. They may be signs of PANS or PANDAS. Early treatment for these conditions is the most effective. During these uncertain times, your child’s mental well-being is more important than ever and waiting until life gets back to “normal” is likely to make symptoms worsen over time.

At Amen Clinics, we’re here for you. We offer in-clinic brain scanning and appointments, as well as mental telehealth, remote clinical evaluations, and video therapy for adults, children, and couples. Find out more by speaking to a specialist today at 888-288-9834. If all our specialists are busy helping others, you can also schedule a time to talk.

13 Comments

  1. My husband has a blinking tic. When our boys were younger they had different subtle tics on and off. My oldest is now in college and he is always doing some kind of ritual where he does the sign of the cross and then points up (as to heaven). I worried bc I know it is something that he cannot stop. I thought it may be hereditary. Could it be? Any suggestions to help ease this anxiety? Thx

    Comment by Colleen Spivey — February 28, 2018 @ 5:28 AM

  2. What if autoimmune issues are actually ongoing infections? Our existing tests for infections may not be accurate, or we may not even be aware of possible infections. The worst thing we could do – if this is the cause – would be to give steroids.

    Comment by Paula Carnes — February 28, 2018 @ 2:11 PM

  3. My daughter was diagnosed with PANDAS 9 years ago. She doesn’t have OCD but she does have anxiety and an eating disorder. At the time there was no test available to see if the diagnoses was corrected there was no treatment. Is there a blood test now or how do we know if the PANDAS diagnosis was correct. IS PANDAS now an accepted disease? At the time of her diagnosis there was a huge debate on whether or not it was even real. thanks for any help you can give sally

    Comment by sally oban — March 2, 2018 @ 8:17 AM

  4. My d is 20 now and the dr. who diagnosed her said she would outgrow PANDAS as she reached adulthood is that not true? Although she doesn’t have OCD or a tic disorder and the time of er diagnosis she was hospitalized for seizure like movement. For a week her entire body was jerking and twitching and although she has absence seizures the movements were not seizure related. She was given an MRI 9 months later and she had a choroid plexus papilloma but it was an incidental finding and was not tied to the twitching at all.

    Comment by sally oban — March 2, 2018 @ 8:25 AM

  5. Check for mould ppl.
    We almost died.
    Scariest time of our lives.
    It was hidden in the walls everywhere.
    Check for mould in your appartment s… It has forever changed my outlook on life. Not 4 the better.

    Comment by Julie Letourneau — May 24, 2018 @ 12:37 AM

  6. I bow my head and say grace over every meal..take dr AMEN’s brain test use it to help you….my prayers go with you…I charge angels to protect you wherever you go. Love and LIGHT…

    Comment by Pam — June 8, 2018 @ 12:56 PM

  7. Sally- most kids with pandas do not have the typical OCD many think of. Many kids have intrusive thoughts that are also considered an OCD. The eating disorder may very well be connected to that.

    Comment by Jaime — June 14, 2018 @ 3:56 PM

  8. My son had the strep infection, impetigo. Does it matter what strep infection they had?

    Comment by Shilouh — December 9, 2018 @ 3:12 PM

  9. Who and how do you test for mold?

    Comment by Beverly Volpone — February 18, 2019 @ 5:16 AM

  10. There is very little discussion about the role of AMPA in behavioral disorders. It is the primary metabolite of glyphosate, and happens to be an agonist for the AMPA receptor mimicking glutamate. It is also relatively ubiquitous in the food chain.

    Comment by Paul T Manza, — February 18, 2019 @ 8:08 AM

  11. I saw a special on T.V. about a woman who met a man on a plane who works in mold removal!! He heard her story & offered to help her & her family. Her son was 4yrs old & regressing & her husband went from a financial advisor to a guy who couldn’t remember what he had for breakfast!! They lived in the home for a total of 6yrs, I think. But, the problem was behind the wall after they had a leak fixed 2yrs earlier. It can be very serious!! I would definitely call someone in mold repair!! Good luck!!

    Comment by Adrienne — February 18, 2019 @ 1:06 PM

  12. My daughter was diagnosed by the NIH 5 years ago with pandas. We flew to Bethesda, Maryland and she was tested in house for a week. We got a diagnosis and she was put on antibiotics for close to a year. While many of her symptoms discontinued, she developed OCD and Anxiety, for which she received Cognitive Behavior Therapy through UCLA. Insurance companies don’t really acknowledge and pay for treatment, much was out of pocket for us. There is an excellent book titled Saving Sammy, which was written 20 years ago by a mom who had a son diagnosed with the condition after bring out of school for almost 4 months due to him manifesting almost every symptom known to Pandas and Pans. There are support groups and more doctors are acknowledging the condition as REAL…just make sure to do your research and find a DR familiar with the condition. We were also worried about an eating disorder, but she has just gained 7 pounds when I started buying her whatever she felt in the mood to eat (healthy items) such as burritos and sushi. Her health at this point (she is 12) is more important than her compliance. Hope this helps anyone.

    Comment by Heidi — February 19, 2019 @ 11:01 AM

  13. Moleculera Labs offers a test called the Cunningham Panel

    Comment by Jodi — May 15, 2019 @ 9:58 PM

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