Thomas was playing with a friend one October evening in 2008. He lay still looking like he was asleep, he started to convulse and did not react to my voice. I rang for an ambulance. I was absolutely distraught.
The hospital where really good with us and said initially that people can have one and never have another. Unfortunately this was not the case. Thomas had a few more seizures and we had been to Alder Hey, Pendlebury and Tameside Hospitals when his seizures where lasting 3 hours plus. During all this Carolyn Taylor came to our aid, someone to show us that this happens to some children and can be controllable and not take over our life. Cant tell you where we would be without Carolyn. Someone to talk to, tell us what happened next, where we where going with his medication. Thomas had several EEG’s, and even one after he had been kept awake for 24 hours, but this did not show much.
After a few changes to his medication his seizures where still not being well controlled. It was decided to do a biopsy, this caused a blood clot in his head and he spent a week in ICU . Thomas was diagnosed with a brain tumour and had radiotherapy and chemotherapy.
Thomas did not have any more big tonic clonic seizures, he did have twitches, head turning, knee upto chest, arms stretched. The tablets he had were Tegretol, Clobazam, Lamotrigine and the seizures definitely became more manageable. With the help from Carolyn who came and talked through issues we had. The HOPE group monthly sessions, where I am the Secretary, had also been a great support and Thomas enjoyed the monthly Slide and Seek sessions.
Unfortunately Thomas died on 21st June 2011. I Thank everyone for there help and support at HOPE. It is helping me through every day.