A Wolf in Sheep’s Clothing

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I spent the day yesterday in clinic, seeing a few fantastic kids, all with a rare epilepsy syndrome that is known to cause a lot of cognitive and learning problems. This is exactly what I worry about most in childhood epilepsies – the effect of the seizures and the epilepsy on learning and development.

So as odd as it may sound, making a diagnosis of one of the more ‘benign’ epilepsy syndromes can be reassuring for me as a clinician. If I have a child with typical childhood absence epilepsy in clinic, I know that there is a good chance we will get the seizures under control, and that after puberty many patients will become seizure free. Yet ‘benign’ in medicine is always a double edged sword: Whilst all the above may be true, it turns out childhood absence epilepsy in some ways is not a harmless condition without any lasting effects. 
It’s Purple Day – aka Epilepsy Awareness Day. So yes – let’s get talking about Epilepsy! It’s great to see so many people, differently affected by epilepsy join the discussion on twitter and give a public face to the condition.

I remember first coming across the quite surprising results from one of the largest population-based epilepsy studies up in Nova Scotia in Canada. Some of the findings are summarised below from a comparison between childhood absence epilepsy and juvenile rheumatoid arthritis, a chronic condition characterised by having to take daily medication, invasive symptoms of chronic pain and low rates of complete remission. 
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Summary of results by Wirrel et al (1997), taken from a review article [2], as the original article sits behind an insurmountable paywall.
“If we don’t know much about their job, we ask, which takes a few minutes but allows us to see parents as real people, not just as egg and sperm providers for a child with a medical problem.”  [3] I was absolutely stunned by these results when I first saw them. It is well known that children with chronic condition, often find the transition into adulthood difficult and struggle with maintaining their medical treatments and being normal rebellious teenagers. I can see how this may affect them outside of their medical symptoms, but the results above suggests that children with epilepsy fare far worse than comparable, chronic medical conditions of childhood. 

Looking at the numbers – the rates of unplanned pregnancies is ten times that in juvenile rheumatoid arthritis. Whilst this has obvious relevance because of the problems many anti epileptic drugs can cause in pregnancies, it also shows that our patients with ‘benign’ epilepsy syndromes are vulnerable in ways that we don’t always appreciate in the clinical setting, where the focus is often on the immediate effects of seizures. 

And I have the feeling that whilst it was news to me when I first read the papers, it is not news to many of my patients families. I see many of them struggle to walk the line between drug side effects, the impact on seizures themselves and the huge psychosocial burden that having epilepsy as a child can bring with it. With clinicians’ focus usually steadfast on the seizure control alone, that can not always be easy. 

In advice given to newly qualified paediatricians, Peter and Carol Camfield, co-authors of the Wirrel study [1], make it clear, that listening to the parents and understanding the family is essential to paediatric practice. Or, as they put it:As in my previous blog posts, this is by now means meant to provide a gloomy outlook for my patients with epilepsy. As seen today on twitter, many people with epilepsy do brilliantly later in life. But I feel as clinicians it is essential to see the wider picture – in a condition that affects the whole brain circuitry, we need to understand not only the acutely threatening seizure state, but also how else these children are affected to provide effective and appropriate health care. 

[1] Wirrel E et al. (1997) Long-term Psychosocial Outcome in Typical Absence Epilepsy. Arch Pediatr Adolesc Med 151: 152-8.
[2] Camfield CS & Camfield PR (2007) Long-term social outcomes for children with epilepsy.  Epilepsia, 48 (Suppl 9): 3-5. 
[3] Camfield P & Camfield C (2010) Advice for residents in paediatrics who have completed training and are starting their first real job. Paediatr Child Health 15: 193-4.

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