“It was like a whirlwind when we were told our young son has a rare form of epilepsy that could be difficult to treat” explained Laura, a parent carer for her young son Sam.
Around 2 years ago, my son, now age 3, started having seizures. They came on a few months after a febrile seizure and it was very gradual to the point where we did not know they were seizures, as they were more like twitches when he was tired and then they gradually got worse. One day his nursery called me and said that I must return back to pick him up and take him to A & E as he has had 8 in a row at breakfast. After taking him to A & E the Doctor said we won’t know exactly what it is for a few weeks until he has an EEG. After doing some research online I suspected it was epilepsy.
The whole event was like a whirl wind and we were told that he has a rare form of epilepsy that could be difficult to treat. Our son had delays but was just starting to walk and then, bam, he gets this. After lots of tests, appointments and trying different medicines, 2 years on we now know he has Lennox-Gastaut syndrome (LGS). Around 5,000 people in the UK have the condition. It has been a nightmare that we are gradually accepting but the worst part has been watching our son suffer injuries from his falls and side effects from his medicines.
In that time my son’s health visitor suggested I visit Gateshead Carers for further support. They have been very helpful from supporting me with my DLA forms, providing ‘Time for Me’ grants and listening to mine and my partners needs. It has been helpful that my Carer Wellbeing Facilitator has had similar life experiences and can share her knowledge, support and help me to feel empowered and positive about our situation. I particularly appreciated the support as I have not found many support groups for families of children with epilepsy and this was somewhere where I felt very welcome and supported.
Being a carer and having a child with a disability and health condition can feel very isolating as it feels like no one understands or knows what to say. Thank you Gateshead Carers – you’ve been brilliant. Just to say Sam is improving all of the time with the majority of his seizures being controlled at the moment.