etandchildrenUnderstanding essential tremor and children

Kitty Reilly, NTF Children’s Liaison Officer talks about essential tremor, children and how people can understand the disorder.

Essential tremor in children can leave parents with many unknown questions such as; can it be cured, will it progress, how will it impact my child, what will their future be like etc.  I know this as I am a mother of a child who has an essential tremor and despite being the Children’s Liaison Officer and Trustee at the National Tremor Foundation (NTF) I still have these questions and thoughts and live with them daily as I am sure does my son.

I became involved with the NTF to start raising awareness of children who have essential tremor, primarily to let them know they are not alone, as my son believed he was, and to support parents in what can often be challenging times especially to get others to recognise the impact essential tremor can have on their child’s day to day life, including and not limited to school.

I am often asked what parents can do to help their children with their day to day life and there are a couple of things that my son has found useful which include Velcro on school uniform to help fasten and unfasten things quicker and removes the need for fiddly buttons and zips, weighted cutlery that helps when eating, gadgets to open cans of drink independently, pens and pencils with a larger grip, Velcro school shoes, electric toothbrush, core strengthening exercises, house keys with an extended grip hold, electric tin opener, extra time from school to complete tasks etc. I find talking to my son about how he is feeling really helps me understand his difficulties, challenges and helps us both to work together to resolve the issues about how he sometimes feels.

What is needed to understand the impact of children with essential tremor is more research.  This is something that is lacking globally and would be extremely beneficial to help children and their families understand the condition further.  Currently, few know that essential tremor in children is one of the most common neurological conditions yet the awareness of the impact and research around the prognosis and treatment is limited this is something together we can change.

If you need any further support or are considering carrying out research in to Essential Tremor in children, please do get in touch at kitty@tremor.org.uk.