What is Cerebral Irritation?

Cerebral Irritation was a term we came across when our daughter had been in hospital screaming non stop day and night for almost 2 weeks (no exaggeration). Family, nurses, carers and hospital staff had all been taking 2 hours shifts round the clock - we were all exhausted, physically & emotionally - Niamh could not be consoled and even huge doses of morphine just didn't take the edge off her distress.

Numerous hospital investigations had failed to identify the cause of this apparent extreme pain and finally we were told that in the absence of any other plausible cause, they were going to put it down to "cerebral irritation."

We were told that the experience of pain can be powerfully amplified by anxiety and incomprehension. It was explained therefore that what we were witnessing may not actually be our daughter in agonising pain, but instead it may just be a neurological phenomenon - minor pain exaggerated in her head.

Cerebral irritation is not uncommon in children with complex neurological disorders.
What is uncommon however is the ability of a child with a complex neurological disorder actually being able to explain what the reason for their behaviour, and as a result, we pretty much have to take the professional’s word for this explanation.

Cerebral Irritation has therefore come to be a term used to describe extreme "perceived" pain that a child experiences which is of unknown origin and where all other obvious causes of pain have been treated or ruled out.

Our experience is that this phenomenon comes and goes. The child may experience prolonged episodes of screaming and inconsolable distress which is devastating to the child and all around them. These can last, hours, days, weeks, months and then appears to just stop - with no obvious link to any specific intervention.

As this screaming is not believed to be due to severe underlying pain, not surprisingly, the usual pain relief has little effect. The best (and only option) therefore seems to be one of medication to reduce anxiety and sedation.

Try the usual pain relief (Paracetamol, Ibuprofen, Codeine, Morphine, etc) which should relieve discomfort, if pain is from an origin that is not the brain.

We used Buprenorphine skin patches on Niamh which are a slow release opiod (changed weekly) that deliver a controlled amount of a morphine like chemical into the body without the need for a IV or sub-cutaneous line. This meant she continually had background pain relief to cover most causes of day to day pain.

When Niamh was experiencing Cerebral Irritation, even high doses of additional morphine failed to relieve this distress.

Think through the problems that your child experiences and tick off one by one, that these could not be the cause of their distress.

Try the basics like distraction, change of positioning, nappy, start/stop feed, play as well as addressing all their medical complications.

When Niamh was experiencing Cerebral Irritation, all the above were addressed but failed to relieve this distress.

It is reported that combination of pain relief and sedation are the only effective way of treating this phenomenon.
As pain relief will usually have been administered first, the addition of an anti-anxiety and sedative drug should give the child short term relief.

Midazolam, Chloral Hydrate (Exixir), Clonidine (Dixarit) and Phenobarbitone have worked for children that we know. However the relief is often only effective for the length of the sedation and if the child wakes up and remains distressed then sedation may have to be repeated.

Almost all the children in our support group have experienced inconsolable screaming like this at some stage.

On average it seems to start anytime after the age of 15 months and strangely seems to have disappeared in all our children by the age of 3.