Today marks the 3yr anniversary of Deborah’s son Lucas’ diagnosis of West Syndrome, when he was a little over 6 months old.
After weeks of getting fobbed off by numerous doctors, with them saying he had reflux or (the best one 🤔😑) his body getting used to eating solids, we finally took him to A&E as we knew something wasn’t right.
There was no emotion behind his eyes looking at him and he’d stopped smiling and doing things he had already learnt.
He was admitted to hospital after an EEG confirmed it was West Syndrome, and he was started on Vigabatrin and luckily for us, this stopped the spasms within 3 days. As soon as the spasms stopped, we had our smiley baby back.
We were in hospital for a week in total, along with having a lumbar puncture and an MRI scheduled and were sent home not knowing what the future was holding.
He came off the Vigabatrin after about a year and was discharged from the hospital after another year or so after that.
Lucas didn’t walk until he was 21months old, his language is still not that of a ‘normal’ 3.6yr old, but he still has good communication skills but sometimes struggles to get across what he wants. Toilet trained during the day within 2days when he was ready at age 3.5yrs.
He’s a sociable little boy who enjoys nursery 3 days a week and loves buses and diggers, and of course his baby sister Freya 😊😊
So I just wanted to share our story and how proud I am of Lucas and how far he’s come along. My little warrior 💜