PANDAS, which stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, is not a new disorder, but doctors have only recently begun to understand what it is and the disturbing and life-altering impact it can have on children and their families.
PANDAS causes sudden and substantial changes in personality and behavior in kids, and although there are some treatment options out there, many parents find it hard to locate doctors who are knowledgeable about the disorder, and offer treatments that have consistent and long-term results.
Confused about PANDAS, or looking for information for your child or a friend or family member? Here are some basic facts about PANDAS to get you started.
1. Some doctors consider PANDAS a controversial diagnosis.
PANDAS may be seen by some in the medical profession as a controversial diagnosis. This makes getting a proper diagnosis and treatment plan that much more difficult, which can have tragic consequences for kids.
2. Many in the medical world are coming around, however.
The good news is that more and more experts in the medical world are taking PANDAS seriously. The National Institute of Mental Health, a government sponsored agency, for example, published a thorough guide about PANDAS in 2016, citing reputable medical sources, and encouraging PANDAS parents to look for doctors who will take their concerns seriously.
3. Symptoms begin suddenly and out of the blue.
Parents often describe a happy, well-adjusted child who suddenly develops very concerning and downright terrifying symptoms. “The symptoms are usually dramatic, happen ‘overnight and out of the blue,’ and can include motor and/or vocal tics, obsessions, and/or compulsions,” explains The National Institute of Mental Health. Other common symptoms include anxiety attacks, heightened anger and aggression, ADHD, and separation anxiety.
4. It can take years to get properly diagnosed.
Because so few doctors are experts on the disorder, it can take a long time to get a proper diagnosis for PANDAS. Parents describe getting several incorrect diagnoses and experiencing failed treatments until their child got the help they needed.
5. Many families have trouble finding doctors who know how to treat it.
Again, it’s not that there aren’t doctors out there who know what PANDAS is or who will treat it, but because there is still so much work to be done to understand the disorder, it can be hard to find a doctor who can properly treat it for your child. Many parents even have to end up traveling across the country to get their kids to a good PANDAS doctor. The National Institute of Mental Health suggests joining PANDAS support groups like the PANDAS network so you can connect with parents who are in the same boat and perhaps get doctor recommendations.
6. It can be tough to find the proper treatment for your child.
According to the National Institute of Mental Illness, if a child is experiencing PANDAS symptoms and their throat culture tests positive for strep, a single treatment of antibiotics is the best course of treatment. However, many parents report that this isn’t a strong or effective enough treatment for their child. Other treatment options, according to the the National Institute of Mental Illness, include plasma exchange or immunoglobulin (IVIG), or treating your child’s neurobehavioral symptoms with SSRIs, therapy, or even CBD oil.
7. PANDAS is usually caused by strep bacteria, but not always.
Infection with strep is the most well-known trigger for PANDAS, but pneumonia and Lyme disease are other suspected triggers for PANS, a similar disease, as well. What happens is that the strep bacteria “triggers a misdirected immune response and results in inflammation on a child’s brain,” according to PANDAS Network, which causes the tell-tale symptoms of tics, OCD, anxiety, and behavioral issues.
8. There is no 100% definitive test for PANDAS at this time.
There isn’t one 100% definitive test doctors use to diagnose PANDAS or PANS, according to PANDAS Network. Additionally, while there are labs tests that can detect PANDAS or PANS, it can be difficult for patients to get their insurance company to cover the lab tests. Doctors will come to a diagnosis based on a “collection of signs, symptoms, medical history, and laboratory findings that cannot be explained by any other neurological or medical disorders,” they explain.
9. PANDAS is relatively rare, but more prevalent than people realize.
As PANDAS Network reports, about 1 in 200 kids have PANDAS. While that doesn’t make it the most common childhood disorder out there, it is more prevalent than you think. According to Susan Swedo, a pediatrician from the National Institute of Mental Health, as many as 25% of kids diagnosed with OCD and tic disorders may have PANDAS.
10. Many cases can be resolved, but for some kids, PANDAS lasts for years.
For some children, one or several treatments with antibiotics is all it takes for PANDAS symptoms to go away. For other children, it’s a struggle to find a cure, and even with treatment, the symptoms recur. Thankfully, most cases of PANDAS resolve by puberty (around 12), according to PANDAS Network, though more research needs to be done to verify that.
Overall, experts dealing with PANDAS are hopeful that more clinical trials and research will be done in the coming years so that some of the unanswered questions about the disorder can be addressed.
Let’s hope we get there sooner than later, because meanwhile PANDAS is devastating too many kids and their parents. The time is now for these children to recover and live the full and happy lives they deserve.
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