If you are wondering, what are PANS/PANDAS, I am here to inform. Here are five things you should know about a somewhat misunderstood and misdiagnosed condition in pediatric medicine.
1. Doctors diagnose PANS/PANDAS based on symptoms. And the list of symptoms is long.
PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and PANDAS describes a subset of PANS associated with Strep. When a child is diagnosed with PANS or PANDAS, they fit a certain criteria of symptoms that come on suddenly (although “suddenly” has its variations).
Symptoms like,
general anxiety, intense fears, separation anxiety, OCD, food restriction, sensory and motor issues, changing school performance and behavior regression, urinary symptoms, sleep disturbances and bed wetting, mood disorders, ADHD symptoms, and school avoidance. Tics may be present, and the symptoms can be relapsing and remitting.
When the symptoms are relapsing it is due to some type of trigger. The trigger could be inflammation in the body form Strep as in PANDAS but also Flu, Lyme, Mycoplasma Pneumonia, respiratory viruses including COVID 19 and its variants as well as stress. When the child is triggered they are in what is called a “Flare”. During a flare is when many of the symptoms relapse making life for a child and their family more difficult.
2. If your child begins to show some of the above symptoms, it’s OK to question authority.
It’s ok to question authority when helping your child. Years ago families didn’t necessarily start looking for medical answers to why their child was behaving a certain way all of the sudden. Over the past 10 years, there has been much more research dedicated to this. Families with children who have been diagnosed with PANS/PANDAS sometimes have to question doctors and therapists. It may take a lot of digging and time to come to a diagnosis.
The PING group at Dartmouth Hitchcock continually researches and improves care and treatment for children with PANS/PANDAS. They are a team of specialists who evaluate and treat children in New Hampshire with suspected PANS/PANDAS conditions, among other things. If you or your pediatrician or mental health provider are questioning if your child fits the criteria you can request a referral for evaluation.
3. Cognitive Behavioral Therapy from a professional that understands PANS/PANDAS can help tremendously.
Families and Children working living with PANS/PANDAS need support above and beyond medicine and treatments. There are many factors that impact families when coping with the symptoms of this condition. Children will need support on how to deal with big feelings and emotions and may struggle with low self esteem after a flare. They may need help with managing anxiety and OCD and parents will need support on how to react and manage behaviors. The more support and the bigger team you have around your family the more successful you will be during treatment and during flares. Within the family practicing mindfulness, getting much needed exercise, balanced nutrition and sleep and balancing stresses are keys to help support yourself as a parent and your child.
4. This is a relapsing and remitting condition with a spectrum of severity.
This condition can be an emotional roller coaster for all those involved. This is a relapsing and remitting condition with a spectrum of severity. When families are at the beginning of a diagnosis, they might feel shame, guilt, frustration, confusion and/or disbelief. Your child may do really well for an elongated time and then relapse after having the flu, for instance. Families need the grace and understanding from the outside world and be reminded that this too shall pass.
There is treatment for PANS/PANDAS.
Treatments include but are not limited to, long term antibiotics, anti-inflammatories, steroid treatment, and intravenous immunoglobulin. Sometimes, doctors prescribe the use of antidepressants. Additionally, there is new research that explains how there may be a genetic component for those who develop PANS/PANDAS.
Some families find that Naturopathic Doctors can help to explore additional triggers and other things that can create flares. Many families find success working with professionals to figure out how to avoid triggers. Note that the state of New Hampshire requires insurers to cover the treatment and diagnosis of PANS/PANDAS in adolescents.
5. Families don’t need to go this alone! There is support out there– but we need more understanding and awareness.
PANS/PANDAS support groups in NH are starting to grow. There is a NH PANS advocacy Facebook group as well as other online support groups. There are many families here in NH that have been through this diagnosis or going through it now. Many families still grapple with the frustration of those who misunderstand, judge or dismiss what they and their child or children are going through. The stigma around mental health is still alive and well and many times families feel alone in the journey as they also want to protect the privacy of their children. The PANS/PANDAS community is another layer bringing more advocacy and research around treating mental health.
The Alex Manfull Fund and upcoming Symposium in Portsmouth
The New Hampshire-based Alex Manfull Fund funds research for PANS/PANDAS and brings awareness to the world. This organization hosts a yearly symposium, held at the Portsmouth Historical Society on October 1st. This is an all day event that will help to educate attendees on how to evaluate for this condition and explore the pertinent new science and research.
After learning more about this condition, be sure to spread the word about PANS/PANDAS. More kids lives depend on it than you may realize.