PANDAS – Does it Exist?
19th April 2019
I first started seeing children with PANDAS about 9 years ago. PANDAS is an acronym for “Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus”.
In simple terms this means that children, following a streptococcus (“Strep’) infection get unusual features such as tics (uncontrolled abnormal movements), obsessive compulsive behaviours, start wetting and may also have difficulty eating.
Streptococcus is a common bacterium that causes tonsillitis, sore throats and chest infections amongst other things. The association between streptococcal infection and abnormal movements (called Sydenham’s Chorea or St Vitus’ dance) was first made in 1802. This was in association with a condition called rheumatic fever.
Rheumatic fever is a condition which occurs after streptococcal infection where you can get inflammation of the heart, joints, skin and brain. The increased use of antibiotics has led to a decrease in the incidence of rheumatic in Europe over the past 100 years. However, the link between streptococcus and these physical problems has not disappeared. It makes complete sense that PANDAS is a rheumatic fever like disease which has been modulated by the use of modern therapies and health interventions such as immunisations.
So, what happens? How does this simple bacterium cause such problems? In fact, it’s not the bacterium but the body’s response to this infection that is the problem, and this explains why cases of PANDAS run in families, because of a genetic predisposition. When you get a streptococcal infection, your body produces antibodies to fight the infection and get rid of the bacterium. The problem in PANDAS is that the antibody that is produced also recognises a part of the brain known as the basal ganglia and sticks to it. This stimulates this area of the brain resulting in tics and obsessions or compulsions. We call this phenomenon “genetic mimicry” the proteins on the surface of this part of the brain look very similar to the surface of the streptococcus and the antibodies are doing what they are designed to do!
So, if you accept that rheumatic fever exists (which most health professionals do) then it is a completely logical step to accept that PANDAS exists.
Posted in: Children's Health Topics, PANDAS by Dr Tim Ubhi
Dr Tim Ubhi
There are some resources on the Children's e-Hospital website PANDAS page and I would also recommend connecting with the UK PANS/PANDAS charity group through their website or via facebook. Hope that helps
I have joined that page and also saw them at a conference I was at in London last month. Their leaflets for Drs, teachers and parents are excellent.
I absolutely totally agree. I have a human biology degree and understand this, I also trained as a nurse and so from a medical stance makes perfect sense. I am also a parent with a 10 year old boy with PANDAS symptoms .... My concerns daily are the lack of knowledge throughout the health care professional community about this condition. I also have concerns about schools not understanding and negatively impacting on children getting help they deserve. My eldest son, now 25 had such severe ADHD he was placed in a specialist school has been arrested numerous times and not known a thing about it and then added mood dosorder and anxiety to boot! My guess is this was also pans/pandas. My first child went through CAHMS for mild OCD, my third also and diagnosed ASD .... I am a professional and I have seen it from both sides. The NHS needs to wake up to this. I work on infectious diseases and people come in with UTI'S and get delerium, we treat them and they get better. We have children getting sore throats, they get delerium and we ignore it saying parents are neurotic !! These are the children of our future and we owe them their childhood. Thank the universe for you Dr Ubhi, highlighting and believing in the parents and support these vulnerable and unwell children !
Dr Tim Ubhi
I would recommend joing the PANS/PANDAS UK charity, they have a facebook page and a website. As it is run by parents there are lots of resources and help that they can offer.
You have recently diagnosed my granddaughter with this condition where would you suggest is best for information, treatment, etc and how I can help and support Libby and her mam?