Eliza’s seizures started when she was 5 months old. I kept video recordings on my phone and showed them to our local GP , we were initially told it was ‘typical baby behaviour’ until I pushed my concerns that it could be Infantile Spasms.
That evening we got a call and told to go through to see the children’s paediatrician in Scarborough Hospital the next morning, we were then referred to York Hospital & Leeds General Infirmary where EEG’s & Neurological Specialist consultant appointments took place.
After an MRI, Lumbar Puncture & what felt like a million hospital trips back and fourth we eventually got the dreaded diagnosis of IS !!
Eliza started on the frontline medication Vigabatrin & Prednisolone straight away, by gradually increasing the doses we finally gained control of her seizures 7 months later but we had no idea the lasting damage those seizures would cause.
Due to Infantile Spasms Eliza is developmentally delayed , she has recently been accepted to be assessed by the Autism Panel. We have some amazing professionals involved to support her development such as speech & language therapy , 1:1 support at nursery, Portage sessions and all of us together have now just began her EHCP plan ready for her to start school next year.
Eliza starting school is a bitter sweet feeling. We are excited to see how she will blossom and grow, but anxious about how she will cope in a completely new setting alongside other children – especially as she is delayed in her speech & communication .
Eliza thrives with routine and lots of repetitive learning so this will be a huge challenge for her, but with her EHCP in place and getting some extra transition support, we know we have done all we can to ensure she has the best start going into her school years !
Not to mention UKIST support group who have been a shoulder to lean on and a community of knowledge!
Our little warrior is the most bold, beautiful & unique little girl and we wouldn’t change her for the world. Every day we face new challenges as parents , we are constantly adapting to the way she learns and sees the world around her. However through the good and the hard times seeing Eliza master new skills is worth it all. We don’t follow ‘milestones’ in our house we celebrate everything she conquers big or small.