PANDAS and PANS
“PANDAS” and “PANS” are relatively newly discovered conditions that are downright scary for both the child and parent. They are characterized by sudden psychiatric and neurological changes in your child. They often appear to have happened overnight.
Initially mistaken for psychiatric conditions, new understanding of PANDAS and PANS have improved the way many doctors examine children experiencing sudden changes in personality or behavior. Yet there is still a chance your child could be misdiagnosed and put on a medication for mood disorders, OCD or ADHD without understanding the true root cause of their symptoms.
Those medications won’t work if your child is suffering from PANS or PANDAS. This is because PANS and PANDAS are autoimmune disorders. If your child has PANDAS/PANS, his or her immune system is attacking their brain. This causes drastic changes in behavior and mood. It often leads to your child developing tics or an aversion to food. We call this a “brain on fire.”
What is PANDAS? What is PANS?
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections (PANDAS), is a disorder seen in children after they experience a group A strep infection.1 Please bear in mind that sometimes months can go by after an infection before your child displays symptoms of PANDAS.
In PANDAS, while fighting a strep infection, your child’s immune system begins to attack his or her brain, confusing the brain tissues for foreign bacteria. It’s an example of friendly fire — an invisible war is being waged in your child’s body. The immune system is unable to differentiate between certain tissues of the body and the infection it is trying to beat, an autoimmune response known as ‘molecular mimicry.’ This is what causes PANDAS.
PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. PANS shares many of the same symptoms and markers as PANDAS — the key difference is that PANS doesn’t come from a prior strep infection. In fact, it is often difficult to narrow down the infection or event that triggered the autoimmune response which results in PANS. PANS is more of an umbrella term for a similar syndrome caused by another (sometimes unidentified) organism or toxin.
Whether it is PANDAS or PANS, you may be feeling frightened and overwhelmed. Your child is no longer the sweet, good-natured, hard-working kid you raised. In their place stands a difficult, often angry, impulsive creature with poor motor skills. We understand how frightening this can be.
Does PANDAS really exist?
Unfortunately, we hear far too often that parents suspect that their child may have PANDAS/PANS based upon a sudden behavioral change, sudden OCD, or food restriction following an infection only to be told that PANDAS “does not exist” or is “controversial” by their physician. The National Institute of Health (NIH) currently has an active inpatient unit where children are treated with severe PANS/PANDAS. Much of the literature about these disorders has come from patients treated in this unit. The NIH PANDAS physician group is currently scheduled to speak at several Pediatric conferences in this coming year to educate physicians on the front lines of pediatric care about this devastating disorder. Remember: You are your child’s best advocate and although it is tough, you need to keep fighting to get your child the best treatment.
A PANDAS/PANS Symptom Checklist
Has your child:
- Suddenly developed obsessive or compulsive thoughts or actions?
- Suddenly developed one or more nervous tics?3
- Developed an aversion to food or difficulty swallowing?
- Become anxious?
- Been depressed?
- Become irritable or quick to temper?
- Shown aggressive behavior or become very defiant?
- Suddenly found schoolwork more difficult?
- Shown a marked deterioration in their handwriting?
- Started behaving as though he or she has regressed to an earlier age (often exhibiting “baby talk” at a much older age)?
- Felt distress at parting from you even for a short while? (called “separation anxiety”)
- Started to urinate more frequently, or lose control of their bladder when previously potty trained (often at night)?
- Lost their fine motor skills?
- Stopped sleeping?
These disorders are particularly suspected when your (typically) prepubescent child has acute onset OCD or begins to restrict their food intake. Your child may also develop a new tic (of the face or body) and display difficult or defiant behavior. If your child is exhibiting some of these symptoms and you feel like they have come out of nowhere – we advise you to consult a physician who specializes in treating PANDAS and PANS.
Your child may need to undergo a different tests such as a throat culture or rapid antigen test, a physical exam, testing for infectious diseases, and immunodeficiency testing. To exclude other concerning diagnoses, an MRI scan of the brain may be needed. Testing for autoimmune conditions may also need to be completed.
PANDAS and PANS Treatments
If you suspect PANDAS/PANS you need to find a Physician with experience in these disorders. Once your child has been tested and the physician has confirmed the diagnosis of PANDAS or PANS, treatment can be discussed.
A course of antibiotics can be the first defense.4 We may need to prescribe a course lasting weeks or months to target the underlying infection. Other antimicrobial agents can be effective too.
2. Anti-inflammatory diet
By anti-inflammatory, we prescribe a diet free of sugar, gluten and dairy. We recommend you work with a health coach one-on-one, learning to prepare healthy, non-processed food to help your child heal from the inside.
3. Anti-inflammatory supplements and medications
We often combine an anti-inflammatory diet with nutritional supplements. Omega-3 fats, curcumin, and boswellia are all anti-inflammatory. A short course of NSAIDS (like ibuprofen) or steroids may also be required for recovery.
4. Intravenous Immunoglobulin therapy
Intravenous immunoglobulin therapy has shown to be especially effective on children struggling with a moderate to severe case of PANDAS/PANS. It reduces inflammation, and although we don’t understand the exact science yet, the donor antibodies either overwhelm the abnormal antibodies, or retrain them.
This blood-cleaning procedure processes your child’s plasma. Plasma is the part of their blood that carries the antibodies and other immune system components. By flushing his or her blood we can reduce the inflammatory response. This is performed at some specialty centers for cases which have failed other therapies.
6. Cognitive Behavioral Therapy
Cognitive Behavioral Therapy (CBT) is an excellent tool. It helps your child realize coping strategies and ways to challenge compulsive actions, anxiety and sudden mood changes. CBT assists your child in regaining their confidence and independence. It is a great coping strategy for the severe OCD symptoms common in PANS/PANDAS.
Tonsillectomy may be a preventative measure to reduce the recurrence of strep throat. Some parents say it gives them peace of mind used as a precaution against strep.
8. Avoid exposure and take antibiotics as preventatives
Avoiding exposure to infection involves close liaison with your child’s school and the understanding of the wider community. When you or your child feel that there has been exposure to strep, it may be necessary to start him or her on a course of antimicrobials as a preventative.
Keep Fighting and Find the Right Certified Functional Medicine Physician
When your child has PANDAS/PANS, it is one of the greatest challenges you face as a parent. To see your child suddenly transform into a volatile monster is an awful experience. Read more in our blog post here.
At Vine Healthcare, Drs. Scott and Ellen Antoine have extensive training and experience diagnosing and treating children with PANDAS/PANS. They are the only PANS PANDAS doctors in the State of Indiana recognized on the PANDAS Physician Network website.
If you believe your child may have PANDAS/PANS and need a Certified Functional Medicine Doctor in the Carmel or Indianapolis area, you can request an appointment here or call our office at 317-989-8463.