PANS Diagnosis Stalled by Slew of Wrong Labels, Medications

Receiving a proper PANS diagnosis much too often comes after numerous wrong diagnoses — from autism to mood disorder to oppositional defiance disorder and everything in between — followed by medications and therapy interventions that fail to target the root problem.

Such was the case for my son, Aidan, beginning with a mood disorder diagnosis at age 3, an oppositional defiance disorder diagnosis at age 7, and ending with an autism diagnosis at age 9. Aidan’s PANS diagnosis finally came at age 10 by the same doctor who diagnosed him with autism a year prior when she witnessed his neurological symptoms and emotional liability during an annual check-in appointment.

This appointment was three weeks after Aidan was discharged from the psyche hospital, where his mood stablization medications were changed, and he was diagnosed with a movement disorder because of tics that had begun a month prior. However, the medication he was prescribed for the movement disorder barely made a difference, and the new psyche meds for the emotional liability didn’t work any better than the medications he was on prior to his hospitalization.

The one positive outcome from his hosptilization was that he was agreeable to taking the new psyche meds — they were capsules that we could open and sprinkle the contents into a small serving of ice cream. Prior to his hospitalization, he was refusing to take his liquid medication because of the taste. He had been on this medication for five years, but had begun fighting us on taking it about the same time his tics started and his rages had escalated from a 7 on a scale of 10 to a consistent 10. He also further limited the foods he would eat.

The more mothers and fathers of PANS children that I speak with, the more I hear stories of their children receiving a laundry list of diagnoses and medications that in the end have no lasting effects. Doses are increased, medications added, and more diagnoses are given; yet, no sustained improvement is achieved, and the parents feel like they cannot find a doctor who they think is really helping their child.

This is a RED FLAG for all parents that I wish I knew when my son was younger. This is why I am writing this post.

In hindsight, I know that the cause of Aidan’s tics, food and medication aversion, and increased rages was because his immune system was attacking his brain. His misdirected immune system response was causing the basal ganglia part of his brain, which controls emotions and movements, to be inflammed and, therefore, malfunction.

Following are several resources that will help parents explore whether their child may be suffering from PANS and prepare to advocate for their child.

It is important to note that there is a subset of PANS called Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections, also known as PANDAS. This subset illness has one trigger — streptococcal or strep for short.

Contrastly, PANS triggers are numerous: viral and bacterial infections, tick-borne illnesses, environmental contaminants, and even traumatic life experiences.

PANDAS Physicians Network explains the diagnostic criteria for PANS and PANDAS and is an excellect resource to share with health practicioners who are not PANS / PANDAS literate. That said, most children who suffer from PANS / PANDAS will see anywhere from five to 10 doctors before receiving a proper diagnosis and effective treatment plan.

Additionally, an interview with Dr. Susan Swedo, former Chief Pediatrics & Developmental Neuroscience Branch at the National Institute of Mental Health, by the Foundation for Children With Neuroimmune Disorders offers insights on why children are diagnosed with any number of psychiatric and neurological conditions before PANS enters the conversation.

“Bipolar and oppositional defiant disorder, even reactive attachment disorder, lots of the labels we throw onto children, and adults for that matter, match the symptoms of PANS/PANDAS, Sydenham chorea and very importantly, autoimmune encephalitis. I think my biggest fear is that a child would come in with a history on one or both sides of bipolar and nobody would even think that this is something other than genetic.”
— Dr. Swedo

It is imperrative that the treatment team pause and question whether an underlying medical condition is the reason for a child’s psychiatric or neurological symptoms. Parents who have done their research and are prepared with accurate information are best positioned to advocate for their child, collaborate with their child’s provider, and appropriately influence the course of their child’s treatment. Finding the right doctor for your child is the key, and the best place to start is with parents in your state who have already gone the course.

Finding a PANS / PANDAS Health Practitioner

Below are links to practitioner directories based on parent or patient recommendations or provider requests to be included. Keep in mind that a practioner who may have been helpful to one family may not necessarily receive a similar review from another family. Also, it is important to note these informational resources do not provide an endorsement or a warranty of the doctors and medical professionals or the care they provide. 

PANDAS Network Directory of U.S. Providers

PANDAS Physicians Network Practitioners Directory

ASPIRE PANS PANDAS Provider Directory

The road for many families to their child’s PANS diagnosis is often long and windy. My hope is that the resources provided in this post help you cut to the chase, find the right doctor for your child, and begin a treatment plan as soon as possible.

The most reassuring words of wisdom that I received during our journey came from a neighbor who has since moved away, but still checks in to see how Aidan is doing. She sat across from me at lunch and said, “This will get better. You have to believe that.”

It was not easy, I admit, but I chose to take her advice. I hung onto her words and convinced myself that there was no other option. My mantra for years was “Aidan will get better. This is not forever.”

My hope for parents navigating their way to a proper diagnosis and treatment plan is that they find doctors who listen, collaborate and assure them that their child’s illness is not forever.

Leave a Reply

Your email address will not be published. Required fields are marked *