What is PANS/PANDAS?
PANS/PANDAS is an autoimmune disease. What this means is when the body’s own immune system is activated from infection, in the case of PANDAS it is usually group A streptococci, and begins to not only attack the strep virus but the neurons in the basal ganglia. The basal ganglia is in control of voluntary motor movement, learning, eye movements, cognition, emotion and making choices that are construed as appropriate. When the basal ganglia is attacked by the immune system, the person exhibits certain symptoms. These symptoms are described by Murphy et al (2017) as obsessive compulsive disorder, and tic disorder, mood disorders, irritability, anxiety and what is term “rages”(p 640-641). Now, these symptoms taken by themselves usually appear to be psychiatric in nature. What separates the PANS/PANDAS patient is these symptoms occur suddenly after an infection, usually from strep. And they can be resolved with treatments that are not psychiatric. This short video explains the basics of the disease presentation.
https://www.youtube.com/watch?v=N1D9xjSY5ns
How is it treated?
The first step in treatment is recognizing that the patient has PANDAS. Again, sudden onset of symptoms after an infection is key. But how does someone know that there is an infection? A 24-hour throat and nasal swab culture is necessary, but these can come back negative because there are strep variants that do not show up on cultures. Another is the Cunningham panel blood test. This is a very specific blood test that looks for certain antibodies. The problem is not every hospital is able to provide this test. According to Leon et al (2018) the general course of treatment is, antibiotics that are effective against strep, along with anti-inflammatories (p 641). Also, some antidepressant and anti-anxiety medications. However, psychiatric medications should be minimal dose, as the patient symptoms are infectious in nature and not psychiatric. For long term maintenance Leon et al (2018) study shows that, intravenous immunoglobulin therapy (IVIG) and plasma pheresis can be considered and used to good effect (642). The problem is how to get these treatments to the patient.
What is the controversy?
Not every doctor, and insurance company believe that PANS/PANDAS is an actual
disease. Unfortunately, the popular media has portrayed PANS/PANDAS as a made-up disease for parents. Chicago Med on NBC Season 3 Episode 17 is such an example. This episode told the world PANDAS is a made-up disease given to parents by doctors to ease their worries. Also, insurance companies and government agencies have gone so far to take the position that PANDAS is not an actual condition. The Connecticut Insurance and Real Estate Committee has cited testimony from these anti-PANDAS agencies. These agencies state that due to the high cost of certain treatments coverage is not financially viable for insurance companies despite evidence that treatments are medically effective. In response, some states such as Illinois Department of Insurance, have put into law that PANDAS be covered by insurance companies.
What steps do you take?
The first step is to recognize your child has this condition. This can be done by seeing a specialist, usually an immunologist, that can make properly identify this diagnosis. There are certain tests that can be performed, The Cunningham panel was one previously mentioned. The second step is to see if the insurance company will pay for these tests and the subsequent treatments. Some insurances do provide services for PANDAS. But most do not and do not be surprised by this. Third step is to find out what treatments your doctor can provide. You doctor can still provide prescriptions for antibiotics, which are effective in reducing the symptoms. However, the most effective treatments are IVIG or plasma phereses. These treatments are usually not covered by insurance companies for PANS/PANDAS.
So what can you do if insurance will not provide coverage?
If you cannot get insurance to pay for treatments for PANDAS there are other possibilities. There are certain co-morbidities associated with PANDAS. A co-morbidity is a condition that is coupled with the first health issue. For instance, a person may have diabetes and a co-morbidity is heart disease. These PANDAS co-morbidities may be covered by the insurance company and can have the same treatments. A frequent co-morbidity of PANDAS is an immune deficiency such as common variable immune deficiency (CVID). Now another thing a person can do is look for an insurance company that does offer PANDAS treatment. This means doing research, finding an insurance company that offers treatment, and then finding an employer that uses that company. Finally, there is the option of paying for these treatments out of pocket. Be prepared for the high price because one treatment of IVIG costs approximately $10,000.00.
The Final Word
Trying to deal with PANDAS and get medical treatment is an exhausting and frustrating endeavor. There may be times, as a parent, you feel nothing can be done and it is hopeless to try and get treatment. That is a natural reaction and feeling. However, as difficult as it is to try and get treatment there is one thing to remember. Your child did not ask for this to happen to them, they did not ask for this disease and the stigma attached to it. Only person who will fight for them.
THAT IS YOU!!!
The parent is the greatest advocate for a child. Just remember that.
References
BIBLIOGRAPHY Ameratunga, R., Woon, S-T, Gillis, D, Koopmans, W, & Steele, R. (2013). New diagnostic criteria for common variable immune deficiency (CVID), which may assist with decisions to treat with intravenous or subcutaneous immunoglobulin. Clinical and Experimental Immunology, 174(2), 203-2011, doi: 10.1111/cei.12178.
Blake, K. (2016). AN ACT REQUIRING HEALTH INSURANCE COVERAGE FOR PEDIATRIC AUTOIMMUNE NEUROPSYCHIATRIC DISORDER ASSOCIATED WITH STREPTOCOCCAL INFECTIONS. Hartford: Connecticut Government.
Chicago Med, The Parent trap Season 3 Episdoe 17 (Season 3 Epsidoe). [Motion Picture].
Illinois Department of Insurance Fact Sheet PANDAS / PANS. (2019, Nov 8). Retrieved from Illinois insurance law: http://insurance.illinois.gov/HealthInsurance/Pandas-Pans.pdf
Kids suffer from debilitating episodes after recovering from strep throat (Nightline). (2019, Nov 10). Retrieved from Youtube: https://www.youtube.com/watch?v=N1D9xjSY5ns
Leon, J., Hommer, R., Grant, P., Farmer, C., D’Souza, P., Kessler, R., . . . Swedo, S. (2018). Longitudinal outcomes of children with pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS). European Child & Adolescent Psychiatry, 637–643.
Molecular Labs. (2019, Nov 10). Grace’s Story: When strep triggers OCD, mood swings and behavioral changes. Retrieved from Youtube: https://www.youtube.com/watch?v=3VnHiCB8yFU
Murphy, T. K., Brennan, E. M., Johnco, C., Parker-Athill, E. C., Miladinovic, B., Storch, E. A., & Lewin, A. B. (2017). A double-blind randomized placebo-controlled pilot study of azithromycin in youth with acute-onset obsessive–compulsive disorder. Journal Of Child And Adolescent Psychopharmacology, 640-651.
PANS and PANDAS overview. (2019, Nov 11). Retrieved from Moleculera Labs: https://www.moleculeralabs.com/pans-and-pandas-overview/