A Damaged Child – Part 4b – My Son With Epilepsy - A Medical Tragedy Happening Now

This was a difficult article for me to write as I had to revisit a lot of traumatic events which happened to my son both before and after his exclusion, including the ‘what if’ question. It follows straight on from then last article but please take a break between the two, go and have a coffee, take a walk, eat some chocolate…

To recap: in the first part of this article, I wrote about what type of medical advice should be sought if a child (any child, whether they have a learning disability or not) is subjected to restrictive physical interventions and what risks a school takes should they choose not to seek that advice. In the second part I want to explore what further advice a school should seek if they intend to restrain a child such as my son, who has a complex, profound, neurodevelopmental medical condition with comorbidities.

Complex and profound medical conditions
In these conditions the advice of a consultant specialist should always be sought. In my son’s case this should have included the Consultant Paediatrician, Consultant Regional Neurologist, Epilepsy Specialist Nurse, Clinical Psychiatrist etc. As you will have already guessed this did not happen at any point.

These specialists could also have informed the school that there are ‘a number of medical conditions which may precipitate unintentional aggression and violence. These include: epilepsy, diabetes, drug effects, alcohol, thyroid disease, dehydration and other metabolic disorders, mental illness and a number of psychiatric and behavioural conditions’ (Bleetman et al 2020). In addition, numerous anti epilepsy drugs also have side effects that can cause behavioural problems and even aggression. My son was on one called Perampanel.

Many learning-disabled children are on psychotropic and psycholeptic drugs which have similar effects. Not just from a behavioural perspective but also these drugs put a child at greater medical risk should they become emotionally heightened and then restrained for a significant length of time.

What are the extreme dangers of using restrictive practices on a child with a complex health condition such as epilepsy?

My son has severe, complex, uncontrollable epilepsy which includes tonic clonic, absence, myoclonic, focal, reflex and subclinical seizures occurring constantly both day and night. There are at least six main seizure types, with many more variations of each of these types. Most people only know and can recognise the common one, the tonic clonic (the stiffening and shaking variety) and, perhaps, absences (when a child goes blank for a few seconds). Recognising a seizure type is extremely difficult yet vitally important and children with complex epilepsy manifest seizures in many and various ways.

Seizures can also be subclinical, which means a child doesn’t actually show any outward manifestation of seizure activity but it is still affecting their cognition, working memory, executive functioning skills and frequently is responsible for unusual behaviour.

The period before a seizure (known as pro drome) often manifests as auras and internal feelings of unrest. In my son’s case he would see yellow circles and feel his head, eyes and tummy flutter. He would often become afraid and distressed and want to run away from the auras, usually out of the classroom and through the corridors. Often his stomach and head would ‘flutter’ repeatedly and he would ask to go home – this would be ignored or refused. Despite informing school about this on numerous occasions school viewed this as naughty behaviour, essentially an attempt to get out of doing work and they treated it accordingly. Incidentally, the period after a seizure (post ictal phase) can also manifest odd behaviours which can be prolonged for days. Psychotic Delirium can also start several days after a seizure.

A lack of specialist knowledge
As you can imagine, this is very complex, specialist knowledge but nevertheless you would assume that special school classroom staff should have basic epilepsy awareness training at the very least. When we asked the School Head after my son’s exclusion if her staff had had epilepsy awareness training, she obfuscated and attempted to mislead and replied “yes, they have been trained to give Buccolam” (a rescue medicine used to stop prolonged seizures) - this isn’t at all the same thing.

To demonstrate the school’s further lack of knowledge, in my son’s Personal Intervention Plan it asked ‘what medical conditions does he have?’ – school answered ‘epilepsy’. A further question asked ‘has advice been sought from the Occupational therapist?’ School replied ‘no because only low level blocks and guides are necessary’.

As you are now aware this school went much further regarding restraint and seclusion without reassessing or rewriting his positive intervention plan, or indeed informing anyone of what they were doing - not even the school nurse. This is extremely concerning, but under current legislation they do not have to report what they are doing.

Let me outline the extremely serious implications of not seeking professional medical advice for my son with epilepsy…

The tonic clonic seizure
No attempt had been made to consult a specialist or write a risk assessment or medical report for what would happen if my son had a tonic clonic seizure whilst being restrained. So let me illustrate what they should have been considering…on one occasion he was put into a seated t-wrap with leg restraint.

The seated t-wrap - it is inevitable that when crossing a child’s arms across the torso and held at the back, the body will lean forwards and in a seated position there is likely to be added downward pressure on the child’s back from the proximity of the restrainer’s body. The chest will become compressed and breathing will be difficult – one of the reasons I believe Bleetman recommended against it in his 2018 report for Team Teach, due to the risk of positional asphyxia. Yet this move was still being undertaken a year later on my son, and some schools still allow it to be used on children today.



You may also recall from Part 2 of A Damaged Child the withdrawal of a similar move called a ‘basket hold’ that was proven to cause positional asphyxia and even death.

Returning to my son’s restraint, imagine my son sitting in the aforementioned life threatening t-wrap with his undiagnosed scoliosis of the spine which means he naturally leans over, causing further restriction and reduction in lung capacity on one side.
factor in that whilst being restrained a child will already be in a heightened state of emotional distress and breathlessness due to their earlier ‘meltdown’, and then consider the distress and panic of being put into this position and perhaps trying to fight against it.
there is a risk that my son’s pre-existing arm injury might even break/fracture again during the struggle
Then finally whilst in this position imagine a tonic clonic seizure happening. The stiffening (tonic part) will squeeze any remaining air out of the chest and in my son’s case another breath may not be taken for 30-40 seconds. My son’s face and lips will turn blue due to lack of oxygen; and that’s even before the shaking starts – school will now have a serious medical emergency on their hands.

Recently whilst monitoring our son at home using a pulse oximeter during the first part of his tonic clonic seizure we recorded our son’s blood oxygen saturation level dipping to 27 mm HG (normal rate is 95+; below 90 is considered an emergency) and heart rate increasing to over 180 bpm. Imagine my son undergoing what I have outlined above, factor in the significant risk of positional asphyxia and hypoxia and the school could find itself with a life threatening medical emergency on its hands particularly if this isn’t managed competently, speedily and an ambulance doesn’t arrive quickly enough. All I can say is that the school was extremely lucky that this never happened as they could have been prosecuted for corporate manslaughter for not seeking specialist consultant medical advice prior to using this move.

Eyelid myoclonia

My son also has eyelid myoclonia (eye flickering) which means when an object is put up close against his face this triggers seizure activity. Prolonged exposure can cause this seizure activity to generalise into a larger tonic clonic seizure. If school had spoken to us, the school nurse or indeed the epilepsy specialist nurse about an egg timer being held 7 inches in front of his eyes in a small dimly lit seclusion room we would all have definitively recommended against it.




Reflex seizures
My son also has reflex seizures which are triggered by various external and internal factors.

External factors include moving from darkness into bright light, flashing lights, light alternating through stripes. Essentially, he has photosensitive epilepsy outlined in his original healthcare plan by the school nurse yet never flagged up in the school’s later positive intervention plan. Likewise, an earlier sensory report had also commented that due to his photosensitive epilepsy he should not be put in artificial light. Hence the dimmed lights of the isolation room should have been flagged up as a problem. Equally, moving from a darkened seclusion room into brighter artificial light in the corridor can also trigger seizure activity.

Internal factors - not only external, but internal factors (emotional stimuli) can trigger my son’s epilepsy condition. What we were later to discover was that his epilepsy condition had slowly started to change in presentation during those last few months. The subject access request revealed that the treatment by school had started to produce heightened levels of both stress, fear and anxiety in my son which we later discovered had produced a new seizure type originating from the anterior temporal lobe of the brain. As any epilepsy nurse could have told school – prolonged severe stress and anxiety are very common seizure triggers. Furthermore, ‘Long term stress can change the way the brain works, it can also change the way you think and feel about your life and how you react to situations you find yourself in’ (Epilepsy Action https://www.epilepsy.org.uk/info/health-matters/stress) hence increasing the likelihood of developing mental health problems such as post traumatic stress disorder (PTSD). This is exactly what happened to my son.


Other considerations …
Mechanical restraint - although there is no indication that it happened to my son, it is important to note that using mechanical restraints (hand cuffs, leg cuffs) on a child who is at risk of having a tonic clonic seizure will cause damage to joints. Equally, restraint of the arms can cause shoulder dislocation and there is an example of a young woman who dislocated her shoulder and fractured her acromion as she was held by her arms in a chair during a convulsion (seizure) (DeToledo et al. 1999).

Seclusion - If your child is being put into a seclusion room on their own without being monitored after a physical restraint incident has taken place then the school is putting your child in grave danger. Children need to be monitored for a considerable time after an incident as some restraint practices have life threatening side effects that occur much later than the incident.

Mental Health Problems and epilepsy
Restraint, seclusion, epilepsy and mental health problems,
Disturbingly, as I pieced together all the incident forms, I noticed that something was happening to my son during those last few months at the school. My son was exhibiting odd behaviours during restraint episodes, something which a medical professional – or I myself – might have picked up on if we had been consulted and shown the incident forms. These behaviours were things such as growling, chomping, and drooling during and after restraint. These appear to have been regarded as naughty boy behaviour. They of course were not ‘naughty’ behaviours. He was in fact developing a new seizure type - focal onset impaired awareness seizure - whilst in an emotionally heightened state. In a child with reflex seizures such as my son’s, they can be triggered by pain, stress, anxiety and heightened emotions - such as those that happen whilst being restrained and secluded.

One of the incidents which resulted in my son’s removal from the school was almost certainly seizure related – a result of the new seizure type which the school had unknowingly produced by their own actions. An observer in the class suggested he was working well before the incident, and afterwards didn’t know where his teaching assistant was or why she had left. This confusion perfectly fits a seizure profile.

Still, the school refused to release the first person account of the incident or discuss and consider that it might have been seizure related. The governors also chose to ignore our request for this document. More worryingly, our son is at high risk of Sudden Unexplained Death in Epilepsy (SUDEP) and, on the occasion when we really needed to see this document to assess whether his seizure condition was changing in its presentation, school refused. We still do not have a copy of this particular document two years later, despite a subject access request to the Local Authority.


This new seizure type continued to get worse during and after he had left the school and it presented as if he was terrified and fighting something or someone off. It exhibited as random flailing arm and body movements, drooling, tightening and chomping of the mouth, random screams and odd guttural noises. It was extremely upsetting to witness, difficult to manage, distressing for my son both prior to and after the seizure and heartbreaking for us. It also affected him psychologically as it was happening numerous times a day and throughout the night. I have no doubt that this new seizure type was generated/triggered by the school treatment of my son in those last six months, and this has subsequently been verified whilst in discussion with several neurologists. Equally CAMHS also confirmed that his subsequent declining mental health was due to severe anxiety and post-traumatic stress caused by the school’s sustained treatment of him.

A warning
I would strongly advise and warn any school who is restraining and secluding a child with an epilepsy condition or any complex medical or neurological condition to get specialist medical and psychological advice. A pre-existing health care plan is not enough if you decide not to seek advice and share what you are doing throughout this process with medical professionals, CAMHS or even the parents.

In researching this article, I have read numerous peer-reviewed papers outlining the fact that you cannot guarantee a child’s safety if you choose to use restrictive practices. Companies who provide restrictive practice training freely admit this is the case, shifting the onus of responsibility squarely onto the school. Their concern is solely to avoid legal action against themselves in case the staff they train are injured, rather than protecting the vulnerable children.

The children being restrained are bizarrely and misleadingly referred to as ‘service users’, in some sort of Orwellian euphemism. I prefer to call them victims. I suggest LEAs and Academies monitor what your schools are doing - and not doing - very closely before you get a serious incident on your hands and legal action against you.

To conclude
Having a child who has suffered trauma and mental health problems , and continues to do so well over two years later, I feel very strongly that these restrictive practices need to stop now. Unfortunately in England it is likely to take a considerable amount of time before this happens, so all we can do is keep attempting to raise awareness.



Then take all this information to your child’s consultant paediatrician, clinical psychiatrist and/or regional medical consultant. I am certain that once they become aware of what is happening to your child including the likelihood of injury and potential psychological harm, they will support you and write a letter strongly advising the school against this course of action and stating the reasons why.

Take legal action against the school
If like ourselves your child has already been subjected to physical and mental harm and no medical risk assessment was undertaken, perhaps you might consider taking legal action against the schools, academies and the LEA for not seeking professional medical and psychological advice before using restrictive practices.

Accountability
As the law currently stands it appears to be extremely easy for schools to argue in favour of reasonable restraint on a learning disabled child as the children are not seen as reliable witnesses, and evidence such as the incident forms are not mandatory and, where they are used, frequently lack sufficient detail. Whistleblowers who have revealed what does happen in schools often have their motives and character questioned in court. However, if a physical injury happens whilst using restraint and seclusion and the medical condition is clearly known about, but a thorough and comprehensive medical risk assessment has not been conducted nor professional advice sought, then there is a prima facie case of negligence.

Our learning disabled and autistic children are unique both neurologically and physically, and I don’t believe any school can be certain that they have covered all bases medically or psychologically. For that reason, if a school doesn’t want a legal case on their hands for negligence and – at some point - even manslaughter, I would say to them: STOP engaging in any restrictive practices on our children except as an absolute last resort.

Consequences
Unfortunately children and young adults have died whilst being restrained (see the list of names below)* and the training providers of these restrictive practices freely admit there are significant risks but continue to train people in them. If you knew there was a risk, any type of risk, then why would you do it? Particularly when there are alternatives such as Studio 3’s Low Arousal Approach. Research papers maintain they are unable to establish whether these restraints are safe or dangerous as to do so would involve clinical trials on human beings and that would be unethical and potentially life threatening. So why do they allow this to happen to our vulnerable SEN and learning disabled children and young adults in real life? How many more deaths will it take before Academies and Local Education Authorities start to take responsibility and closely scrutinise the restrictive training providers they use and monitor what their own individual schools are doing day in and day out?

So in the meantime – schools, academies, local authorities, and indeed staff who are asked to undertake such restraint – think very carefully about the actions you take or are asked to undertake: you are taking a ‘significant risk’ as, apart from prosecution, are you able to live with the death of a child on your hands?

Finally- a damaged child–part 5 - mental health, a new school and a lesson in caring