Kitty Reilly opens up about her experience being a parent with a child with essential tremor.

When Shea was born I remember looking at my beautiful boys face and feeling the eternal love fill my body. As a mother, right in that moment all I wanted was for my precious baby boy to be happy and healthy and live a life free from problems.

At around 18 months old I noticed Shea's hands trembling when he was trying to open things, or play with toys. It was at that point I took Shea to the GP, for the first time. At around three years of age, Shea's tremor seemed to be more obvious, so I went back to the GP. 

Shea must have been around five when he went for the MRI scan and although being a radiographer and  knowing exactly the reason for the scan, and the process, the thought of my beautiful boy whom I felt this eternal love for being ‘put to sleep’ to have his brain assessed was heart breaking. After the scan it was then that he was diagnosed.

I tried to research ET in children and found very little information.  I looked for support groups and found nothing.  I asked the neurologist if he was aware of any and he wasn’t.  I did come across the National Tremor Foundation (NTF) and contacted a lady, Mary in Scotland for some support at a time when we felt very isolated.

Our real first challenge began when Shea had been prescribed Propranolol. I noticed quite quickly the impact this medication had on Shea.  After several months this medication was discontinued as the side effects were causing more issues than the ET. 

At school the main issues I had was getting his teachers to actually understand what difficulties he faced such as writing (he is left handed also), drawing, cutting and sticking, not to mention the impact on him holistically with the variety of medications that were tried and the side effects they had.   Shea had developed many self-taught techniques to try and minimise his tremor though, such as fixing his legs around the chair to gain more stability, using the Velcro on his coat to fasten it instead of a zip.

Today Shea is doing well in an academy but still experiences difficulties for example fastening his top button to put his tie on, wearing school trousers and doing the fastener, all of which became apparent on the his first day, that was so hard to see, I just sobbed and sobbed once again for my boy.  

We both know the future will hold challenges and it’s the hardest thing in the world to see your child crying because they are scared of the future, but we try to remain positive.