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PANDAS/PANS: Trust Your Instincts & Be Your Child’s Advocate

Imagine you have a happy, loving 5-year-old son. From ages 5 to 10, he suffers from the typical elementary school aged illnesses, including strep throat infections about once a year. At age 10, your son has a normal life…he is doing well in school, immerses himself in fiction books, and enjoys play dates with friends and playing games with his brother. At age 10.5, while recovering from a strep throat infection, his life and your family’s life is forever changed when the antibodies which are supposed to fight the infection, begin to attack the part of his brain that controls thought and movement.

He stops responding to his name, isn’t sleeping, has frequent tics, and develops obsessive compulsive disorder (OCD). Your son suddenly went from an advanced student to a special needs student. He is now disabled. Your pediatrician diagnoses him with an autoimmune disorder, but because of the psychiatric symptoms, he refers you to a psychiatrist who starts treating him with psychiatric drugs. He only seems to get worse.

Your sweet, smart, innocent, full of life child started having psychiatric symptoms, seemingly overnight, and you don’t know where to turn. This sounds like a mom’s worst nightmare, doesn’t it? This is a reality for Lynn Becker Haber and her son Gary, who had, and is still fighting, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, or as it as been coined, PANDAS.

What is PANDAS?

Have you ever heard of PANDAS? I’m not surprised if you haven’t. I only recently learned about PANDAS and I was amazed to find out that it is not more widely known. In the medical community, it appears that PANDAS (and also PANS-Pediatric Acute-onset Neuropsychiatric Syndrome) is very controversial and not well understood.

In 1998, Dr. Susan Swedo discovered a link between strep throat infections and sudden onset OCD and/or tics. According to PANDAS Network, “PANDAS occurs when a strep throat infection triggers a misdirected immune response resulting in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more.” Said differently, your normally functioning child becomes a completely different person, seemingly overnight. PANDAS Network estimates that PANDAS/PANS affects as many as 1 in 200 children. This statistic was startling to me because as a parent, I’ve never heard of it from a doctor, yet it is affecting many children everyday. Here is a fact sheet created by the PANDAS Network that provides more details.

New England PANS/PANDAS Association says that there has been raging controversy about the disorder and its appropriate treatment since its discovery in 1998. The controversy stems from the common practice of treating PANDAS with psychiatric drugs, rather an antibiotics and immunomodulatory interventions to address the infection and misdirected immune response, which is what happened with Gary.

Lynn and Gary’s Battle

At age 10.5 when Gary started exhibiting sudden and severe psychiatric symptoms, his pediatrician did diagnose him with PANDAS, but at that time, Lynn was directed to a psychiatrist because the treatment was considered to be identical to what is normally prescribed for psychiatric symptoms. In reality, though, PANDAS is an autoimmune medical illness, which requires treating the infection and the misdirected autoimmune response itself, rather than the psychiatric symptoms.

Gary was diagnosed with OCD, Attention-Deficit/Hyperactivity Disorder (ADHD), and Tourette’s Syndrome (TS) and treated as if those were his underlying issues, rather than PANDAS. Lynn’s instincts told her that psychiatric drugs were not the right treatment for Gary, and when these treatments failed, she sought out help from PANDAS specialists. Throughout middle school and high school, Gary was in and out of hospitals and underwent several medical procedures and therapies, including plasmapheresis, intravenous immunoglobulin, special diets, supplements, and neurofeedback.

While his fellow classmates were attending school dances and getting ready for graduation, Gary was still struggling with PANDAS, which had now developed into a severe case because he had not received proper treatment when he first exhibited symptoms. Now at age 20, Gary lives at an integrated group home in New Jersey that treats PANDAS in a natural way, in hopes that someday, he will be able to live a normal life. 

Lynn has been Gary’s advocate throughout this process, trusting her instincts and educating others about PANDAS. Lynn and Gary are one of six families involved in the documentary film, My Kid is Not Crazy: A Search for Hope in the Face of Misdiagnosis, which aims to spread awareness about PANDAS and to continue to educate the public on this disease.

If anyone is interested in learning more, there is a movie screening and Q&A with filmmaker Tim Sorel on March 30, 2017 at 7:00 PM at the Fairfield Cinema at Bullard Square. Lynn and her husband Sam will be on the Q&A panel at the end of the movie. Gary has a significant role in explaining PANS and PANDAS related terms throughout the movie and he will be joining his parents for the Q&A session. The screening is a fundraiser to support the New England PANS/PANDAS Association and tickets need to be purchased in advance here.

Trust Your Instincts and Be Your Child’s Advocate

Lynn has shared a few tips with me that she hopes can help fellow moms:

  • When your child has a strep infection, be on the lookout for other symptoms that come on suddenly, such as tics, OCD, anxiety, hallucinations, or delusions. If your child is not acting normal, bring PANDAS up to your pediatrician.
  • Don’t ignore strep infections. Make sure to get your child tested, treated, and continue to be on the lookout for any sudden psychiatric symptoms. PANDAS needs to be caught early on, or else your child could become permanently disabled. Trust your instincts and don’t give up.
  • Testing for PANDAS can be tricky. You need to be your child’s advocate. If PANDAS does not come up in initial tests and your child is still having symptoms, consult with a PANDAS expert and ask for more advanced testing.
  • Similar to PANDAS, PANS also is a misdirected immune response triggered from an infection, such as Lyme Disease, Mycoplasma Pneumonia, or Mononucleosis. If your child suddenly exhibits psychiatric symptoms, get them tested for other infections/diseases and trust your instincts if it’s stemming from something other than a psychiatric disorder.

Lynn says that the biggest struggle with PANDAS is that you are not only fighting the illness, you also have to fight doctors and other health professionals to make sure that your child is treated properly for an autoimmune disorder and not a psychiatric disorder. You need to trust your instincts and be your child’s advocate.

You can learn more about PANDAS/PANS at PANDAS Network, New England PANS/PANDAS Association, Moleculera Labs, and National Institute of Mental Health.

Many thanks to Lynn for sharing her and Gary’s story with me and for spreading awareness and education about PANDAS/PANS.

Please share this to spread the word so that everyone can be educated about PANDAS/PANS.


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