Why the PANDAS /PANS controversy is dangerous :
1) symptoms of PANDAS / PANS can be absolutely horrific and it can include severe OCD, tics, food restrictions leading to anorexia, sleep disturbances, psychosis, depression, mood swings, and more.1 These issues can appear overnight and can be absolutely debilitating. People can lose their quality of life and can have personality changes meaning that the parents do not recognise their child anymore and life can become in living hell as an individual may require all around care and become unable to do simple tasks. An individual may have severe psychiatric symptoms that can be so severe that an individual develops suicidal ideation - there have been kids that they say they want to die because of this condition and if anything can be done to relieve these people's pain and suffering then why isn't it done? It is no coincidence that people go into remission once receiving the correct treatment including antibiotics, anti-inflammatories, IVIG etc 2,3,4,5 because the root needs to be addressed. This isn't a simple psychiatric issue - it can be triggered by infections and this is what needs to be addressed as soon as possible as you don’t want to leave an infection untreated, especially if it’s triggering an autoimmune attack on the brain. When people deem PANDAS / PANS 'controversial' it is preventing people from receiving life-changing or potentially life-saving treatment.
2) Treatments and therapies for typical psychiatric conditions aren't always very effective for PANS / PANDAS as for some people the psychotropic medications may exacerbate issues or they may cause side effects as people with PANDAS / PANS are said to be more susceptible to having negative reactions to certain medications which can lead to restlessness, irritability and other issues. 6 It's important to remember that the immune system is still attacking the brain which can cause damage to the basal ganglia, leading to cognitive decline and meaning that it could become chronically debilitating if not addressed, so early intervention can prevent years of suffering, but it is never too late to get the right treatment. Psychotropic medications can sometimes be used to stabilise certain symptoms such as OCD, tics, psychosis, anxiety and depression however they don't address the other symptoms such as motor coordination issues, cognitive decline, brain fog, decline in handwriting and maths ability, oppositional defiance, personality changes, rigid thinking, rage attacks and other features therefore it's important to get to the root of the condition and have a holistic approach rather than just managing specific symptoms. Psychological and Behavioural therapies such as Cognitive Behavioural Therapy, Exposure Response Prevention and Comprehensive Behavioural Intervention for Tics can help some people to an extent, however sometimes the symptoms of PANDAS / PANS are so extreme that therapy may be ineffective in the acute stages of the disease. If I use an analogy - Imagine that there is a flood, therapy is like getting a bucket and slowly scooping out the water, however when the inflammation in the brain and the triggering factors are still present, the ‘leak’ is still there so water is coming gushing in therefore therapy may not be making a difference, or the individual may not be in the might frame of mind nor have the ability to participate in therapy due to rigid thinking, delusional thinking, extreme brain fog, dissociation, a near catatonic state or cognitive decline, so the ‘leak’ needs to be addressed first through anti-microbial, anti-inflammatory and immune supporting methods so that the ‘flood’ can evaporate and then the bucket (therapy) can be used to clear up the remainders (residual symptoms). CBT can be used to help an individual challenge their thoughts and ERP can sometimes be used to help someone face the OCD fears where possible and cbit can sometimes be helpful for managing tics in some circumstances, however the therapies do not target other symptoms that can cause significant impairment in people's lives. Again, the therapies are not a cure for the OCD as people may still have debilitating anxiety and constant intrusive thoughts but therapy may help someone cope when in a flare and the cbit isn’t a cure for tics either as people still deal with the premonitory urge, sensory tics and cbit isn’t always effective for people with very extreme tics. It's vital to find the root so that you can treat it from where it starts rather than just managing the symptoms as they come. Nobody should have to live their lives with these horrific symptoms when it can be addressed by treating the underlying infections and inflammation.
3) People need early intervention to prevent subsequent flares from being so severe. In some cases PANDAS / PANS can become chronically debilitating when not addressed, and the longer someone is left without treatment, the harder it is to bring someone back to baseline. Without treatment people may spend their lives suffering from debilitating, heart wrenching, distressing and horrific symptoms but with early intervention they could have had a good quality of life, which everybody deserves. There are people requiring lifelong care and people in psychiatric units who may have PANDAS / PANS that wasn't recognised or addressed which caused them to have their lives ruined by this affliction and the misunderstanding, controversy and misconceptions about it meaning that they were unable to access the treatment that they needed at the right time so they endure years of unnecessary suffering.
4) PANDAS / PANS have a massive impact on family life. A study by Jennifer Francovich Shows that 50% of caregivers exceeded the caregiver burden in their child's first flare 7 and the caregiver burden in PANDAS it is comparable to those with Alzheimer’s, the study also found that the caregiver burden decreased in a group of children who were treated at a specialist PANS clinic showing that being understood and having access to the appropriate treatments can give everyone involved a better quality of life. Some parents of kids with PANDAS / PANS can experience Post Traumatic Stress Disorder due to trauma or living through this experience with a child and many parents mourn for the child that they're seemingly lost as a child has changed almost overnight into someone who seems like a stranger to them. These parents are often blamed for their children's problems as some kids with PANDAS / PANS have rage attacks and oppositional defiance and sometimes parents are blamed for this which can cause him to feel incredibly guilty. There have even been parents who’ve been taken to court and their children have been taken away from their parents by the state because of the misunderstandings around this condition, but when the correct diagnosis is given, parents feel listened to, validated and understood and they have an answer as to what has happened to their child which can clear up some of the guilt and gives some hope for treatment. A little bit of understanding, empathy, compassion, support and accurate knowledge from professionals about PANDAS / PANS makes a huge difference. Many parents also suffer from financial issues as insurance in the USA may not always cover treatment for PANDAS / PANS but thankfully there are improvements in this but some states still might not and this is a massive issue because people are suffering and parents sometimes have to pay out of pocket to give their child their life back, but that can cause them to suffer financially but when awareness of PANDAS / PANS is more mainstream then hopefully insurance can always cover treatments so that people can recover and get their life back.
5) PANDAS / PANS can have a serious impact on education. Symptoms such as anxiety, brain fog, intrusive thoughts, hyperactivity, inattention, decline in maths ability, handwriting deterioration, rages, severe tics and other issues make it very difficult to function in an educational environment such as school, college or university, so teachers need to have an understanding of PANDAS / PANS so these people can be given the accommodations while they're in a flare and so teachers understand why students may have a relapsing-remitting course with fluctuating symptoms and why new issues may suddenly arise. It is also vital that schools are aware so that they can notify the parents of any cases of strep in the class so that the student with PANDAS does not come into contact with the strep bacteria.
6) PANDAS / PANS doesn't just affect kids 8 and it's not something that you just grow out of when you turn 18, people need treatment early on to ensure that the symptoms don't last until adulthood otherwise they can become chronically debilitating and this needs to be prevented in any way possible. The National Institute of Mental Health also lifted the age restriction from PANS as people can develop it at any age. Awareness of PANDAS / PANS is vital so that people don’t have to deal with extreme symptoms in adulthood, and when people are diagnosed early on they can get antibiotics in the next flare to prevent the suffering as soon as possible as the doctors would know what was going on. I wish for a world where all psychiatrists, psychologists, neurologists and paediatricians are aware of PANDAS / PANS.
This brings me to the question – Why is PANDAS / PANS seen as controversial?
· It is a paradigm shift as some people don’t understand how mental illness and neurological symptoms can be linked to an infection, but if you look at other neuroimmune conditions such as autoimmune encephalitis, psychiatric and neurological symptoms can be the main features, such as in anti-NMDA receptor encephalitis. 9 We have come to see the mind and body separately, but thankfully with research we are starting to see that mental health conditions can often have a physiological basis.
· Some people have some element of cognitive dissonance when PANDAS /PANS is mentioned as it goes against what they have been taught and believe, but more research is coming out and things are progressing.
· It is a relatively new condition, PANDAS was discovered around the 1990s by Dr Suzan Swedo, and anything new in medicine can take time to accept, but it shouldn’t take this long as people's lives are being ruined by this condition and it needs to be more widely recognised as soon as possible.
· The pharmaceutical industries may prefer someone to be reliant on psychotropic medications for the rest of their lives rather than putting someone into remission by addressing the root as it may give them more profit in the long term if people continue taking psychiatric medications, but this ruins peoples lives as the medications are not always effective and they don’t address other symptoms which can be debilitating and anything that can reduce these people’s suffering and anguish should be done as no-one should have to endure this hell, people need the correct treatments such as antibiotics, IVIG , anti-inflammatories, diet changes, plasmapheresis etc.
How do we know that PANDAS / PANS is real?
There is a plethora of research proving the existence of PANDAS / PANS:
- People with PANDAS / PANS have been found to have anomalies on a brain scan that show inflammation is present 11
- Patients with PANDAS also have “elevated individual autoantibody titers and positive CaMKII activity” 12
-Antibiotic treatment has been found to be helpful for some people with PANDAS 13,14,15
- Plasmapheresis ( a blood cleansing treatment for autoimmune disease) has been shown to be effective for people with severe PANDAS 16,17
- PANDAS / PANS has been studied by researchers at Harvard University, Yale University and Stanford University18,19,20, Stanford has their own immune behavioural health clinic where they specialise in treating patients with PANS, PANDAS and autoimmune encephalitis. 21
- It is no coincidence when a person suddenly develops OCD, tics ,sleep disturbances, rages, food restriction, separation anxiety and urinary symptoms after an infection, this collection of symptoms cannot be allocated to one specific diagnosis, except from PANDAS / PANS, there may be some overlap with Tourette syndrome as OCD and rages are common in TS, however the urinary symptoms , sudden (rather than gradual) food restriction and separation anxiety specifically would be able to show that it is something more.
- It is no coincidence that people have a relapsing-remitting course of symptom severity, and that when they get an infection they have a flare of extreme symptoms that can quickly become debilitating, and in each flare people can have new symptoms arise that they have never had before, that then abate when people are given the appropriate anti-microbial or anti-inflammatory treatments ( such as seeing an improvement with ibuprofen ) .Some doctors put this down to ‘it would have gotten better anyway’, however families often have to fight for the appropriate treatment, and when they eventually get it, symptoms improve, and this happens way too often for it to be termed a ‘coincidence’.
PANDAS is a recognised condition by the World Health organisation, it is in the International Classification of Diseases 10, under the code D89.89, and it is in the ICD 11 under the code 8E4A.0.
-
ASPIRE. PANS PANDAS Symptoms: A unique set of symptoms. [online] Available at: https://aspire.care/symptoms-diagnosis/symptoms/ [Accessed 16 Nov. 2020].
PANDAS Physician Network (2013). IVIG | PPN. [online] Available at: https://www.pandasppn.org/ivig/ [Accessed 16 Nov. 2020].
PANDAS Physician Network (2017). Antibiotics | PPN. [online] Available at: https://www.pandasppn.org/antibiotics/ [Accessed 16 Nov. 2020].
Pandasnetwork.org. (2018). Treatment – PANDAS Network. [online] Available at: http://pandasnetwork.org/treatment/.
www.nimh.nih.gov. NIMH » Guidelines published for treating PANS/PANDAS. [online] Available at: https://www.nimh.nih.gov/news/science-news/2017/guidelines-published-for-treating-pans-pandas.shtml [Accessed 16 Nov. 2020].
PANDAS Physician Network (2014). SSRI | PPN. [online] Available at: https://www.pandasppn.org/ssris/ [Accessed 16 Nov. 2020].
Frankovich, J. et al (2018). The Burden of Caring for a Child or Adolescent With Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): An Observational Longitudinal Study. The Journal of Clinical Psychiatry, [online] 80(1). Available at: https://pubmed.ncbi.nlm.nih.gov/30549499/ [Accessed 16 Nov. 2020].
Goodman, J. Adult PANDAS: Seek and Ye Shall Find. [online] Available at: https://www.psychologytoday.com/us/blog/attention-please/201501/adult-pandas-seek-and-ye-shall-find [Accessed 16 Nov. 2020].
Wang. W et al. (2020). 'Psychiatric Symptoms of Patients With Anti-NMDA Receptor Encephalitis', Frontiers in neurology, 10, p.1330
digitale@stanford.edu, img src=’//sgec stanford edu/content/dam/sm-news/images/2015/08/digitale-erin-90 jpg img 620 high png/1449288340000 png’ alt=’Erin D.B.E.D.E.D. is the pediatrics science writer in the O. of C.E. her at (n.d.). Brain-scan abnormalities found in children with PANS. [online] News Center. Available at: http://med.stanford.edu/news/all-news/2020/05/brain-scan-abnormalities-found-in-children-with-pans.html [Accessed 16 Nov. 2020]
Chain, J.L., Alvarez, K., Mascaro-Blanco, A., Reim, S., Bentley, R., Hommer, R., Grant, P., Leckman, J.F., Kawikova, I., Williams, K., Stoner, J.A., Swedo, S.E. and Cunningham, M.W. (2020). Autoantibody Biomarkers for Basal Ganglia Encephalitis in Sydenham Chorea and Pediatric Autoimmune Neuropsychiatric Disorder Associated With Streptococcal Infections. Frontiers in Psychiatry, [online] 11, p.564. Available at: https://pubmed.ncbi.nlm.nih.gov/32670106/ [Accessed 16 Nov. 2020].
Chain, J.L., Alvarez, K., Mascaro-Blanco, A., Reim, S., Bentley, R., Hommer, R., Grant, P., Leckman, J.F., Kawikova, I., Williams, K., Stoner, J.A., Swedo, S.E. and Cunningham, M.W. (2020). Autoantibody Biomarkers for Basal Ganglia Encephalitis in Sydenham Chorea and Pediatric Autoimmune Neuropsychiatric Disorder Associated With Streptococcal Infections. Frontiers in Psychiatry, [online] 11, p.564. Available at: https://pubmed.ncbi.nlm.nih.gov/32670106/ [Accessed 16 Nov. 2020].
https://www.researchgate.net/publication/44385689_Early_antibiotic_treatment_in_a_child_with_PANDAS_A_case_report Arsivi, N. (2010), 'Early antibiotic treatment in a child with PANDAS: A case report'
Matts Johnson MD, Prof Elizabeth Fernell MD, Julian Preda MD, Lena Wallin MD, Prof Anders Fasth MD, Carina Gilburg MD et al. “ Paediatric Acute Onset Neuropsychiatric Syndrome in children and adolescents : An observational cohort study” The Lancet Child and Adolescent Mental Health - Vol 3. 1 P175-180, March. 2019.
Johnson, M., Fernell, E., Preda, I., Wallin, L., Fasth, A., Gillberg, C. and Gillberg, C. (2019). Paediatric acute-onset neuropsychiatric syndrome in children and adolescents: an observational cohort study. The Lancet Child & Adolescent Health, [online] 3(3), pp.175–180. Available at: https://www.thelancet.com/journals/lanchi/article/PIIS2352-4642(18)30404-8/fulltext [Accessed 16 Nov. 2020].
Latimer, M Elizabeth et al. “Therapeutic plasma apheresis as a treatment for 35 severely ill children and adolescents with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections.” Journal of child and adolescent psychopharmacology vol. 25,1 (2015): 70-5. doi:10.1089/cap.2014.0080
Latimer, M.E., L’Etoile, N., Seidlitz, J. and Swedo, S.E. (2015). Therapeutic Plasma Apheresis as a Treatment for 35 Severely Ill Children and Adolescents with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Journal of Child and Adolescent Psychopharmacology, [online] 25(1), pp.70–75. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340509/ [Accessed 16 Nov. 2020].
pandasnetwork.org. 2018 Harvard-MGH Survey | PANDAS Network. [online] Available at: http://pandasnetwork.org/2015/10/2018-harvard-mgh-survey/ [Accessed 16 Nov. 2020].
pandasnetwork.org. Yale Study Finds Antibodies in PANDAS | PANDAS Network. [online] Available at: http://pandasnetwork.org/2018/10/breakthrough-ivig-study-will-be-announced-at-national-aap-conference/ [Accessed 16 Nov. 2020].
PANS: Pediatric Acute-onset Neuropsychiatric Syndrome. (n.d.). PANS. [online] Available at: http://med.stanford.edu/pans.html [Accessed 16 Nov. 2020].