Content Warning: Some of the content in this blog post may be very upsetting for some readers.
As well as dealing with horrific symptoms, or seeing your child deal with horrific symptoms such as intrusive thoughts, hours worth of rituals, sleep disturbances, intense anxiety, food restriction, involuntary movements, severe depressive symptoms, developmental regression, intense brain fog and memory problems, violent rages and personality changes, coordination problems, hallucinations and cognitive decline (everyone's condition presents differently, people in the PANDAS / PANS community also often face a lot more. This is often due to ignorance and misunderstandings around the conditions.
1.Parents / carers being accused of Fabricated Induced Illness (formerly known as Munchausen by proxy): Unfortunately, parents / carers of children with PANDAS / PANS are sometimes accused of FII which is where a parent or guardian makes their child ill, pretends their child is ill or exaggerates their child's illness. These allegations happen in many different parts of the world. It is traumatic for a parent of a child with PANDAS / PANS to be accused of this as their child genuinely has a complex condition, but it is one that is often misunderstood by medical professionals. Thankfully awareness is increasing so less parents in the community should be accused of this.
2. People thinking the condition is purely psychiatric: This is an issue because although PANDAS / PANS causes serious psychiatric symptoms, it isn't actually a psychiatric condition. In fact, seeing it as a psychiatric condition can be harmful. Although psychiatric intervention is needed as part of the treatment, to help people manage the psychiatric manifestations of this condition it is also vital the people are given antimicrobial and anti-inflammatory treatments. If people think the condition is purely psychiatric then people with PANDAS/PANS may struggle to access the appropriate treatment.
It is vital that people get the antimicrobial, anti-inflammatory and immune modulating treatments as people with PANDAS / PANS may not respond to psychotropic medications, or CBT / ERP when in a flare. People are more likely to see benefits from CBT when the underlying inflammation and triggers are addressed. As well as this, the psychotropic medications do not address the neurological symptoms that many people in the PANDAS / PANS community experience such as personality changes, loss of coordination, sensation changes, developmental regression, intense brain fog, memory decline, loss of speech, cognitive decline, complex sleep disturbances and much more. These symptoms can sometimes be just as debilitating as the psychiatric symptoms - they are sign of a brain that is being attacked by the immune system, this is not a sate someone can be left in. With the correct treatment it has been said that people can remit entirely, if people do not get the correct treatment then they may be left to suffer for their entire life and never really get themselves back. Entire lives are lost, how would you feel if this was you or a loved one? People with PANDAS / PANS have also been reported to have paradoxical reactions to SSRI medications and psychotropic medications in general, so they do not work for everyone and for some people do a lot more harm than good.1
3. Forced psychiatric stays: PANDAS / PANS can cause very serious psychiatric symptoms such as debilitating OCD, severe depression, psychosis and more. In some cases it can be so severe that people are sectioned into a psychiatric facility. Sometimes this may be necessary so that someone is kept in a secure environment where they are around staff who are able to keep them safe. However, people with PANDAS / PANS need immune / anti-inflammatory and / or antimicrobial treatments to make a full recovery, and the psychiatric hospitals may struggle to provide this. There are some psychiatric units that can provide medical treatments, so this sort of hospital / ward would be a lot more helpful for people with PANDAS / PANS, but some people struggle to access a psychiatric hospital that has these facilities to meet all needs. The forced psychiatric stays can be utterly horrific as people with PANDAS / PANS often have separation anxiety, and if people are sectioned then the parents may struggle to get them the care that they need whilst they are on the ward.
4. Financial Strain: The treatment for PANDAS / PANS (such as IVIG) can be very expensive. A lot of people have to go private as it can be difficult at the moment to get effective treatment for free in the UK, but thankfully people in the community are working hard to change this.
In the USA, not all states have insurance that covers treatment for PANDAS / PANS. Thankfully, advocacy is happening to try and get insurance to cover the treatments.
Some families in various parts of the world sell their cars or houses or get loans or fundraise to try and pay for treatment. This must change.
5. Having to visit countless doctors just to find one that understands PANDAS / PANS: There are a few doctors dotted around who really understand PANDAS / PANS, awareness must increase amongst doctors so that people do not have to search so much to find a doctor who can help them. Some people have to travel hours, or to another country such as America to try and get the appropriate treatment. This needs to change.
6. People thinking it is a behavioural problem when it is not: Many people with PANDAS / PANS experience rage attacks, irritability and oppositional defiance. Unfortunately, some people view this as 'bad behaviour' when it is not, it is a symptom due to an inflamed brain.
When people with PANDAS / PANS are thought of as being 'badly behaved', then people may be disciplined (which doesn't help) for a symptom. This can seriously harm someone's self-esteem.
As well as this, parents may be told that their parenting is the problem when it is not. This can make a parent doubt themselves and feel guilty.
7. Facing family members or teachers who do not understand: It can be incredibly frustrating to try and keep explaining PANDAS / PANS to someone who just doesn't seem to understand. This can take up a lot of energy and may mean that parents, siblings and the individual is isolated from the rest of the family or may mean that the individual is not getting the appropriate support in school.
8. Children being taken away from their parents: Unfortunately, this isn't unheard of. This may be due to false FII allegations or due to false medical neglect allegations or due to people thinking it must be behavioural and down to the parents. My psychiatrist threatened to put me in a care home when I was 12 years old, this terrified me. Thankfully it never went further than that, but for some people it has. Google 'pandas pans Boston custody' to learn about one very heart-wrenching case.
Thienemann, M., Park, M., Chan, A. and Frankovich, J. (2021). Patients with abrupt early-onset OCD due to PANS tolerate lower doses of antidepressants and antipsychotics. Journal of Psychiatric Research, [online] 135, pp.270–278. Available at: https://www.sciencedirect.com/science/article/abs/pii/S0022395621000339 [Accessed 5 Mar. 2021].