The Forever Fear #Epilepsy

I doubt there is a parent out there who doesn’t recall the fear associated with the first year of their baby’s life, due to the heightened risk of cot death. The sense of relief at the first birthday party you are secretly rejoicing in the significantly reduced risk of this terrifying prospect. I recall it vividly with my eldest.

Sleeping

A little known, or publicised, fact is that for those with epilepsy the risk is ongoing. According to the Lullaby Trust, 0.27 babies in 1000 are affected by cot death compared with 1 person in every 1000 people with epilepsy, who are affected by SUDEP – Sudden Death in Epilepsy. SUDEP is often unexplained and it is a devastating and complete shock for the families affected. (More info can be found at http://www.sudep.org).

GG is now 7 and this fear haunts us daily. Diagnosed with epilepsy at 2 years old, GG has tonic clonic seizures, which historically have been the most dangerous although thankfully, the least common. GG also has absence seizures which affect her day to day and sleep seizures which happen several times a week as she sleeps, often several times a night.

We take every precaution possible. GG is medicated, she is on a video monitor overnight that is inches from my nose and that I check at regular intervals through the night. We have a bed mat – not dissimilar to those used by parents in the first year of a child’s life, that is designed to detect seizure activity. We do not 100% trust the mat it, however we do like the back up.

During the day, GG is never out of the sight of an adult armed with emergency medication, in case of a seizure. Fortunately, the need to intervene has become less and less common, as we have tested and improved the balance of medication. GG is able to live a full and active lifestyle – she embraces each day with a huge smile and a belly full of laughs.

GGs epilepsy is part of a wider, undiagnosed, genetic condition. GG is known as a Swan (Syndromes without a name). GG also has a severe learning disability, hypermobility, low tone, squints and the list goes on. Of all of these conditions, it is the epilepsy which is by far the most concerning. We are fortunate that medication has significantly reduced the tonic clonic seizures,  and although day to day management of the challenges associated with learning disability have become more impactful, it is the epilepsy that keeps me awake at night.

Before GG I would have wrongly assumed that there would be help for families in this position. I would have assumed that pediatricians and neurologists would have been helping families to understand and manage the risk of epilepsy and SUDEP. I imagined a world where parents would access overnight support so that, just occasionally, they might sleep without needing to have one eye on a monitor. In reality none of this is the case and we, like many parents, are left to handle this alone.

We certainly hope that GGs epilepsy remains stable in the coming years. We are well aware that all can change with the onset of puberty and we will cross that bridge when we get to it. However we live with the ongoing fear of SUDEP as do so many people with epilepsy and their families. It is clear that SUDEP needs to be discussed, awareness must be raised and an open dialogue held between medical professionals and their patients. Much more research needs to be done to understand the causes, reduce the risk and ultimately aim to prevent SUDEP and its’ devastating impact.

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