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What is West Syndrome? What should I do if I think my child has it?

If you’re reading this blog, you will likely know it is about my daughter Nova, and her journey with West Syndrome. I also reckon you’re probably consulting Dr Google and asking him… what exactly is West Syndrome? So… I decided to explain West Syndrome as a mother of a child who has it!
Now, a lot of people say West Syndrome is a form of epilepsy. And whilst it technically is, I would say West Syndrome is a lot more than that. West Syndrome is a combination of symptoms, combined with a specific type of seizure. Your child will be sent for an EEG at first, and this is because West Syndrome is usually diagnosed by the presence of hypsarrhythmia. The other thing that may be present with West Syndrome is a lack of visual response. This is because if left untreated, West Syndrome can cause CVI. This should normalise once the seizures are under control, although it can take years for some children. Another thing that tends to happen if left untreated is that your child may start to regress developmentally. Nova was like a newborn again by the time she was treated. The other symptom of West Syndrome are the seizures themselves. They are very distinctive, and are very unique to West Syndrome. I remember Nova used to curl up into a ball and cry out in pain repetitively, multiple times a day.

West Syndrome is usually treated with steroids and epilepsy medication. For Nova, they prescribed ACTH, prednisolone and vigabatrin. The good news is, many children manage to go medication and seizure free relatively quickly, and many even begin to develop once the seizures are treated. Seizure control is not however guaranteed. West Syndrome is one of those annoying diagnoses that come with a “wait and see” outcome. The spectrum is massive, and no two children are the same. So many factors can affect the outcome, such as underlying medical problems which cause the seizures, brain damage, genetic disorders. And even for those children who’s tests all come back normal, the outcome can still vary so much.

So what should you do if you think your child is having seizures? If you think they are having a seizure, especially one related to West Syndrome, take them straight to the nearest hospital with a paediatric A and E. West Syndrome has a much better outcome the sooner it is treated. Make sure they give your child an EEG and MRI, demand answers! Remember, you are the only voice your child has. I wish with all my heart I had fought harder for Nova, unfortunately I didn’t and the damage had already been done.

For Nova whilst her seizures are controlled and she has not had any since June last year, she is still only about 10 months old developmentally. She does not walk, does not speak, and still plays with baby toys. The future is very much unknown, and there is every possibility she may go onto develop epilepsy again in the future.

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