The Politics of PANS PANDAS

15th March 2021

PANS PANDAS as a diagnosis has been gaining significant traction in the UK especially with the amazing work of a group of parents who set up the UK PANS PANDAS charity in 2017. Following the release of the UK PANS PANDAS Physicians Network Treatment Guidelines in 2018 there was a significant amount of progress made in raising awareness of this treatable condition and a large number of children benefitted from realtively simple and safe treatment that improved if not completely resolved the symptoms that they were experiencing. The group of doctors who came forward to help develop these guidelines came from prestigious institutions around the UK, including The Evelina Children’s Hospital in London, Alder Hey Children’s Hospital in Liverpool and Birmingham Children’s Hospital amongst others. The concept of a movement disorder resulting from a bacterial infection was not new to medicine, I refer in particular to Sydneham’s Chorea, a well established sequelae of rheumatic fever, where antibodies to streptococcus cross react with a part of the brain involved in movement control and cause abnormal movements and obsessive compulsive symptoms. It was Sue Swedo’s work into Sydenham chorea that led to the identification of a sub-group of patients, pre-pubertal children, who had a dramatic onset of tics and obsessive compulsive behaviour following a streptococcal infection. This group responded dramatically to anti-inflammatory and antibiotic treatment. Sue Swedo went on to coin the term PANDAS, Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. This sub-group of post streptococcal movement disorders has led to significant discussion amongst health care professionals in the UK and sometimes those discussions have not been very constructive. The practice of medicine in the UK is relatively conservative, particularly when compared with the US. There are also “established institutions” that have a vested interest in the whole concept of PANDAS or PANS. Quite often a child with sudden onset tics or OCD behaviours is labelled as having a “behavioural problem” or “autistic traits” or even “Tourette’s like”. The last of these is because technically you need to have symptoms for a minimum of 12 months to be given a diagnosis of Tourette’s. The pathway that a child with PANDAS goes down is very dependent on the speciality of the doctor that they first meet. What I mean by this is that a general practitioner may view a child with PANDAS differently to a paediatrician , a neurologist, an immunologist or indeed a psychiatrist. The investigations (if any) will differ between each speciality and here lies the problem. Another layer that should be considered is that many “experts” eg in autism or Tourette’s syndrome will have a point of view that has been moulded over decades of experience to fit their area of interest. It is not surprising therefore that they might not even entertain the idea of a new disease that could potentially explain the symptoms in a sub-group of their patient populations. We must however continue to encourage doctors from all medical specialities to have an open mind and to consider relatively simple treatments in a controlled and time limited way that may improve the symptoms that their patients are experiencing. If a child does have autism or Tourette’s syndrome then that is fine and the appropriate support should be put into place to help that child develop as normally as possible and to alleviate their symptoms. But, what if that child had PANDAS and was demonstrating symptoms that could be treated with a short course of antibiotics? Should we give the antibiotics or refer to psychiatry for treatment with psychotropics or refer to neurology for treatment with drugs such as clonidine or haloperidol. The first pillar of medicine is to do no harm, I look forward to hearing the thoughts of health professionals and parents alike.


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Posted in: Health Politics, PANDAS by Dr Tim Ubhi

Comments

Scottish Parent

2021-03-17 14:13:56

Don’t forget there are those within the medical community who need to justify non research based criteria for FII and any Rare Disease parent is at risk because of the time it takes the NHS to diagnose this due to lack of research, specialists and protocol in this area and the need for parents to seek help from specialists throughout the UK or internationally because of the complete lack of will they come up against to take on what they are observing. The rules for FII are being made up as they go, based on no research but accepted by the medical community, creating havoc within Rare Disease families, suicide in distraught mothers and families torn apart even when all the evidence points to Rare Disease. Even googling a condition is dangerous for mums according to recent news releases by medics and the BBC. And no one can see the prejudice in these statements and medics who have created them are saying a new group of mums are harming their child but don’t know it. Who are they talking about? Are mums of Rare Disease suddenly unable to know right from wrong just because they now have the choice to follow research based protocol where the UK lack the will to provide it? Even NICE advise turning to charities for toolkits where protocol are lacking in Rare Disease by Royal Colleges. Yet if FII is applied even if a non specialist states referral to a specialist is not necessary a Mum is at risk. What proof is their for statements like these broadcast on UK radio? It is spinechilling and dangerous for caring, conscientious parents. Yet Baroness Cumberlege who recently led an independent investigation into widespread medical failings states women are not being listened to and advises googling and recording medical sessions to play back with family to get outside opinions on what is being proposed. Very contradictory to what every doctor in the UK is being told by FII guidelines. If protocol were in place for all Rare Disease who are the FII Conspiracy Theorists going to turn their very bias and wrong criteria on? I hope they have the strength to deal with it whoever it is because Governments certainly will not consider changing these horrific protocol even though they are aware parents feel it is being used to cause bias towards those who are vocal about negative experiences, just because they have the luxury of not having a child with Rare Disease. It is a dangerous time to be the parent of a PANS/PANDAS child. That is the reality we live in while trying to do the best for our child based on research we are told can bring our child back to health. Thank you to all the doctors who stick their head above the parapet to fight for a better life for all these children based on the facts we know to date. It is not an easy thing to do.

Valentina

2021-03-17 08:55:04

My 12 years old nephew has been suffering from pandas since he was about 7. He has home through all kind of treatments and been visited by different doctors researchers on this rare disease in Italy. But he has no improvement yet and personally I am wondering if all researches are Just Black on a White paper but not Easy to put into practice or shared among specialized doctors. I am not a doctor, Just a teacher, so I might be wrong or misinformed but actually there might seem no solutions at the Moment. Thanks for you consideration and attention

Gabriella

2021-03-16 17:32:13

Just adding that one can have PANS and Autism at the same time. So, not treating the medical issues of PANS just because a kid has autism is discriminatory medicine. Autism is not part of the differential diagnosis.

A parent

2021-03-16 07:16:44

Putting the child’s health interests first and doing no harm. What do these mean in the context of PANDAS? It would mean that the holistic impact on the child is documented and acknowledged. The psychiatric symptoms are often the most dramatic and focussed on, and many of the other symptoms are frequently ‘missed’ or disregarded . It would mean a change in thinking around the onset, impacts, and appropriate support for specific learning difficulties and cognitive deficits that many children develop. It would mean taking time to understand the complex presentation, onset, duration and individual patterns on the child . It would mean that the child’s health and well being is the priority , not political agendas, discipline bias, or speculative theories documented as facts. It would mean that a change in a child’s presentation affecting so many functional domains warrants investigation and treatment for an organic cause. It would mean acknowledging that there is a lot about the brain and these neuropsychiatric presentations that we do not know . It would mean really listening to the parents. It would mean hearing the child’s voice, their bewilderment, their fear, their suffering and trying to understand. It would mean help, honesty, compassion, collaboration and support all wrapped around the child. This is all so far from the current experience for so many families.

Emily Jackson

2021-03-16 06:28:24

Thank you for being so honest. In August my daughter has been ill for 10 years, overnight onset and an early stay in hospital as she’d lost so much weight and still the only help she was offered was psychiatric with all of their psychotropic meds. Do no harm’ shouts out to me here as they did, they made my daughter so much worse, SSRIs made her suicidal and she did indeed attempt this on more than one occasion, they made her self harm very badly, the scars of which she will carry forever, along with the mental ones of being told her illness was behavioural and bring excluded from school so many times - her crime refusal to go to class as her OCD was too strong, her thoughts too intrusive. Penicillin brought her back after nearly 7 years. Sadly EBV clashed with this and she can longer take what helps and as she’s 17 soon and will apparently be discharged from CAMHS, I fear for her future. She was 7 at onset no one helped, she lost her whole childhood. The bigotry and the misdiagnosis and therefore mistreatment of our children is so very wrong and blinkered. Many doctors will only see what fits into a box. Our kids never will! Thank you for what you do.

PANDAS parent

2021-03-16 01:20:13

We have research papers being written by psychiatrists and a few neurologists affiliated with known anti PP organisations trying to disprove the link. America treats these conditions with success, yet here the kids are left to suffer. Clearly as a small island the approach that’s been taken by our doctors is not working and we do not know better than the rest of the world. Psychiatrists are causing more harm then good and I feel their entire foundation is crumbling. Organic causes should always be investigated before jumping to anti psychotic medications.

Anonymous parent.

2021-03-15 20:54:22

So much more needs to be done to educate GPs to be mindful of this horrific illness. The complete change in a child warrants a trial of antibiotics and anti inflammatories. The horror this illness cause is unspeakable. Such trauma made worse by a lack of understanding and treatment options on the NHS. The difference antibiotics made to our daughter was incredible and anti inflammatories. At her worst a steroid infusion helped to suppress her immune system attacking the brain. She has now had one treatment of IVIG and we were amazed at how she improved but it is likely she will need more treatment. Her sister has recently been diagnosed with an eating disorder and she was by far the highest strep carrier in the family. 1200 when normal was 200. We are working with the system to help treat her ED but at the back of my mind I am questioning whether she also has PANS. How can two happy flourishing children change so dramatically? Regression is incredible and mental distress caused by intrusive thoughts is heart breaking. Why is the NHS not actively doing more. How many children are being treated for mental health symptoms that could be improved by antibiotics and anti inflammatories?!!!! Still fighting to get my children back. But will not give up.

Pandas parent

2021-03-15 19:37:16

Great read, thank you so much for shining a light on this. I completely agree with this in terms of the political battle that's at play. It's devastating. Is it still referred to as a "movement disorder"? As not all pandas patients have physical tics. It is also worth considering that "short" courses of antibitoics are commonly insufficient, many pandas children require long term (usually prophylactic) antibiotic treatment - and this in itself is part of what's thrown around with PP discussions as causing "issue". Even though there are other conditions, Sydenhams Chorea being one of them, that is treated with long term antibiotics (and primarily not to treat active infection).

Nicola Martin

2021-03-15 19:33:16

For 18 years I've tried to get professionals to listen & to help, yet all symptoms have always been blamed on my son's Asperger's. Many psychotropic drugs were freely given but not one blood test to look for possible underlying reasons for such extreme behaviour or even vitamin deficiency. How my family has survived I really don't know, but we will be forever scarred & traumatised by nearly 2 decades of this hell. We had to go private in the end for a diagnosis but what about treatment, especially if ivig is needed? We're trying to get NHS support but it's a long laborious journey whilst we struggle every day. The cost to my son's health and our lives is incalculable.

Amanda Newport

2021-03-15 19:24:10

My son has PANDAS, I have spent over 3 years trying to get support for my son, finally he has an open minded Paediatrician and an experienced Infectious Diseases Professor that understood the issue and for the first time I didn’t feel like I was talking to myself, my son is now on Prophylactic Antibiotics, but the really sad thing is, last night I came across “My Kid is Not Crazy” on Amazon Prime, horrific, the fact that medical professionals would rather, either accuse parents of FII, take the child away from the parent, treat with psychiatric drugs, than give a child antibiotics and do a few blood tests, is barbaric and cruel. I discussed this issue today in a review with my sons paediatrician on the phone and I find it absolutely unbelievable that we accept that Scarlett Fever “Strep” can cause Rheumatic Fever or Sydenhams Chorea, effecting the heart and brain, yet somehow so called medical professionals poor doubt on a direct link between strep and sudden, onset of Cognitive, Motor and Vocal Function alongside Obsessions, Compulsions and Intrusive thoughts. I’m not sure what I, we as parents can do to help other than, keep pushing medical teams to understand and be open minded. But what I do know is Neurologists needs to stop finding something in their little black book to diagnose children with because like my son it has delayed proper investigation and treatment for over 2 years. Also, is there a prevalence in PANDAS in the last decade because we have moved away from Tonsillectomy ? Or is that just a coincidence ? Thanks Dr Ubhi, keep pushing .. We can’t be ignored forever !

Claire

2021-03-15 19:00:04

What harm is there in treating a child with a short course of antibiotics and anti-inflammatories? Especially compared to months or years of psychotropics or SSRIs and their unknown effects on the developing brain. Not to mention months and months of time wasted on therapy that actually doesn't treat the root cause of tics, obsessive compulsive behaviours and varying degrees of anxiety. What's the harm in trying antibiotics? We're all aware of developing antibiotic resistance, but if a patient fits the criteria then surely the benefit of potentially curing that child early on, with a course of antibiotics, greatly outweighs the risk of antibiotic resistance. If a patient needs antibiotics surely they should get them. Not only this, but the longer they go without treatment, the more damage there will be done. I'm guessing these behaviours will become habit and require a lot of therapy and meds to break the cycle thus costing a lot more money, time and expertise which currently the NHS do not have. All for the sake of a course of antibiotics.

Rhienna sweet

2021-03-15 18:33:46

A constant battle for the appropriate treatment via the NHS for our children. Even after being diagnosed by a qualified paediatrician with expertise in PANDAS such as yourself. We will continue to fight for our children and are so grateful for all the work being done to raise awareness. Thank you Dr Ubhi

Patricia pollins

2021-03-15 18:14:51

Doctors are supposed to “ cause no harm either by either act or omission”. They may not be beating our kids over the head with a stick but by neglecting to treat a condition that is treatable and at very little expense, they might as well be. God knows what harm is being caused to their brain which is the same as can be said for trauma. Therefore, they are causing harm by omission and should be taken to task for it.

Jane Bird

2021-03-15 17:44:43

We're receiving lots of harm due to false FII accusations. One child having seizures and can't even get to see a neurologist on the NHS. The fight is desperately real. We've seen a reduction in symptoms by addressing excess ammonia at home. No one will listen because try think I'm a fruitcake. I dread to think how severe my child has to get before someone acts. 3 boys with PP so I must be making it up right?! *Eye roll.

Bex D

2021-03-15 17:28:11

When our son got ill it was devastating. To have a child so ill is hard enough but to have to fight so hard to be supported and believed by certain hospitals and mental health teams is something I never expected. It unacceptable that this is even an issue and I’m truly grateful for the doctors who support this cause. I will never understand that our child will get offered antipsychotics and SSRIs like they are sweets yet the same professionals would question/judge the use of antibiotics. We have found especially from a children’s mental health side that they don’t see or want to see that illnesses can cross over/trigger into mental health. I’m glad we have the NHS support that we do and so grateful as I know many other parents can’t get that support on the NHS.

Sonia Serrano

2021-03-15 17:20:10

I have two children with PANDAS. We had to ask for help from a practitioner in the US, after 13 months of our children deteriorating more and more because our NHS, sadly, didn’t know how to treat our children effectively. Both children’s symptoms decrease 90% to 100% with the use of some antibiotics and antiinflamatories. My youngest son has been off all medications for 3 weeks now, after 3 years on antibiotics, and doing great! My eldest has just stopped antibiotics 2 days ago, after 4.5 years on them. I really hope he does well too, as he has not yet been able to stop treatment without neuropsychiatric symptoms creeping back. PANS PANDAS destroy families and cause trauma to children. Antibiotics work. Antiinflamatories work. Parents are not making this up. I hope this is the end of the road for us.

Kevin Draisey

2021-03-15 17:18:13

Completely agree, as a parent of a child with Pandas I’ve been horrified by some behaviours we’ve witnessed, at best you’d call it professional snobbery, at worst it’s medical bigotry. It’s always from the side of mental health towards the physical health side, when as a parent we just want a true collaboration and joint approach, not suspicion and / or competing agendas. We are so very grateful for the help we receive in treating Pandas from our medical team. At the centre of this is an ill child, and we shouldn’t have to fight politics as well as the illness.

Mary

2021-03-15 16:52:17

Very well explained. Thank you for your continued work. I’m so lucky o found a group of people that understood my child’s condition very early on. And that we turned symptoms via antibiotics.

Just a parent

2021-03-15 16:19:16

First do no harm is exactly right. As a patent all we ask for is proper & relevant diagnostic investigations to ensure the correct treatment for our children. How can strong psyc meds be prescribed without ruling out an organic reason for the presentation? We are told psychosis in children is rare but they are willing to prescribe them without blood tests. However PANDAS is also deemed to be rare so why is it one diagnosis & treatment is favoured above all others? Especially in a developing brain.

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