Living with epilepsy - Epilepsy isn't just seizures

24 Mar 2023

Claire Bishop is mother to five children aged between 7 and 16. Her 13 year old boy Alfie and one of her twin daughters Millie live with epilepsy. Her other twin daughter has neurofibromatosis type 1. There are a lot of medical appointments to attend, medicines to try, side-effects to manage, seizures to monitor and manage - and all around a busy family life.

Claire spoke to us ready for Purple Day on March 26th to help explain the impact epilepsy can have on those in a caring role. She also shared some of her experiences with parenting and caring for a family where epilepsy is part of daily life.

Epilepsy isn't just seizures

Claire explains that seizures are just one part of epilepsy and only one part of the impact on family life. Trying new medications can impact everyone, with side-effects often causing violent mood swings which significantly change behaviour.

'Trying different medications can be quite hard on the rest of the family. Some of the medications we've tried have had really difficult side-effects.

Both Alfie and Millie tried one that made them get really angry and lash out. That needs a parent to be there all the time, managing that, supporting them, and that takes away from the others - as well as it being really exhausting supporting a child who is angry all the time. We couldn't keep on with that one. The side-effects have meant that we don't have that many choices for medications.'

Claire highlights how she has to invest a lot of time in emotional support for her children, especially after a seizure, but also in day to day life, which creates demands on her time as a parent who is trying to meet the needs of each child equitably.

Education is another area that is affected. Around 1 in 5 people with a learning disability also have epilepsy and whilst Claire's children have not been diagnosed with learning difficulties, they do experience tiredness and concentration difficulties at school. Alfie's writing is too difficult to read so he uses a computer for all of his written work.

Managing multiple conditions is another challenging area. Millie also has a hormonal condition requiring regular injections and MRIs for monitoring, and has recently had an issue detected with her optic nerve, resulting in more hospital visits to juggle.

Finally, where another family might think nothing of a day out, or a holiday, Claire explains that this requires significant planning for them, from where the nearest hospital is, to whether there will be any triggers, how much energy will be needed, and who will care for the other children should anything happen to one of them.

'We have to assess and analyse everything. We had our first holiday abroad last year - and had to plan for everything. A day playing in the pool might be too tiring, heat from the sunshine could trigger them - everything needs to be really thought through.'

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