Many parents come to our doors seeking help for their child whom they suspect has PANS or PANDAS. These parents have either heard of the possibility from their doctor or come to suspect it after some reading online or in a parenting group. Others have never heard of these acronyms but just know that something is not right with their little ones (and they want answers). Regardless, all want to know if this is the right diagnosis and what to do about it.
Pediatric Autoimmune Neuropsychiatric Syndrome (PANS) or Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep (PANDAS) are controversial diagnoses in the world of medicine. Children with either generally arrive at pediatrician offices with parents reporting relatively sudden onset of either psychiatric symptoms or neurologic symptoms. Some parents recognize a time association a virus or strep infection and the onset, while others can only remember a loose connection. The psychiatric symptoms may range from anxiety and depression to panic attacks or obsessions and compulsions. The neurologic symptoms mainly include tics in which children repeat a movement or behavior over and over and over regardless of the life disruption it causes.
These children appear to suffer from the effects of autoimmune inflammation on their brains. Some otherwise minor infection like strep in the case of PANDAS or any other infection in the case of PANS causes the child’s immune system to attack the child’s nervous system. This attack leads to inflammation which leads to weird effects in the child.
Depending on the exact mistaken target in the nervous system, the inflammation can trigger different symptoms that the parents witness in their child. Sometimes, the immune system attacks nerve cell components in a motor area of the brain, often producing compulsive tics. Tics present themselves as uncontrolled repeated simple or complex behaviors in the child’s daily life. The tic may come out unconsciously or produce such an inner discomfort from withholding the tic that the child finally gives into the action or behavior. Simple behaviors could be throat clearing, a facial twitch, or an unusual movement of some extremity. More complex behaviors could be vocal tics, such as the child blurting out random words, or motor tics, like carrying out a coordinated action, e.g. running.
Sometimes, the nervous system inflammation triggers emotional changes. Children can go from calm and generally happy to anxious, fearful, moody, and somewhat irrational. They may begin having panic attacks. They may fear separation from parents leading to school absences or refusals to sleep in their own rooms. The resulting anxiety and depression can lead to social isolation and decline in school performance.
Now that you are armed with some background, you simply want to know if your child has PANS or PANDAS. You will feel sorry for other’s plight at another time. Your focus is on whether or not your own child has this condition and what can be done to fix it.
Let’s take this in two steps. The first step includes some basic questions to decide if you should go further into this diagnostic pathway. Ask yourself these questions first:
- Did your children develop emotional or neurologic symptoms over a short period of time (from a few weeks down to seemingly overnight)?
- Do you remember an infection in the day to weeks before the symptoms began?
- Do you remember an infection in your child’s siblings during that time?
If your answers are “yes” to one or more of these questions, consider these questions next:
- Do you know that your child’s emotional or neurologic symptoms worsen significantly with infections?
- Does your child seem to improve with antibiotic therapy?
- Do your child’s emotional or neurologic symptoms seem to improve with therapies like ibuprofen or steroids which lower inflammation?
If you have reached this point and your suspicions are growing, what should you do next? At the very least, ask your pediatrician about the possibility. Hopefully, your child’s pediatrician is at least familiar with the condition or willing to go beyond the “it’s just a phase that your child will grow out of” response. If they don’t feel comfortable answering, cannot answer, or are dismissive of even considering it, don’t give up. There are clinics like ours where you are taken seriously and can get more definite answers.
At Sanctuary and other functional pediatricians, we know that your child’s immune system can turn on your child’s nervous system when an infection tricks it. We know that this can result in some very weird symptoms in your child that won’t go away on their own. Most importantly, we know how to help so that your child does not have to live with this for a lifetime nor lose their childhood waiting for them to “grow out of it”. And we definitely don’t want to just stick your child on a medicine to cover up the symptoms without treating the root cause.
We will spend a lot of time with you and your child looking for clues in the history to confirm the PANS/PANDAS suspicions. We will target our diagnostic testing towards the most likely culprits so we can apply therapies appropriately. Besides targeting the infectious trigger, we also look for toxins that may be contributing to the illness and identify nutritional deficiencies which may worsen the condition. As we work on these deeper mechanisms, we offer a variety of short term supports that lower symptom severity while waiting for full resolution. Once the root causes are addressed, we guide your child’s recovery of past damage and then shift to maintenance aiming to prevent relapses in the future.
Helping children recover from potentially debilitating PANS/PANDAS is a joy because we know that they have long lives ahead and don’t need to waste any more time with unnecessary psychiatric and neurologic symptoms caused by PANS/PANDAS. We look forward to both answering your questions and seeing your child overcome what stands in the way of their healthier future.
Sanctuary Functional Medicine, under the direction of Dr Eric Potter, IFMCP MD, provides functional medicine services to Nashville, Middle Tennessee and beyond. We frequently treat patients from Kentucky, Alabama, Mississippi, Georgia, Ohio, Indiana, and more... offering the hope of healthier more abundant lives to those with chronic illness.