Warrior of the Week

Introducing this weeks Warrior of the Week Lee, here Mum Heather tells you all about her gorgeous little chappie.

Lee was diagnosed with IS in March 2016 at 5 months old after several failed attempts to be listened to.

Doctors and medical professionals told me it looked like trapped wind or colic. I went to A&E during the day when I knew everyone would be working their shift and showed them my recordings. After an hour or so wait I was taken into a room by several neurologists and was told about West syndrome – I had never heard of the condition before so did not worry too much till I got home and toyed with idea of searching google!! Big mistake!!

It was Easter weekend when we were diagnosed so you can imagine my worry with that 4 days of hell. He was put on prednisolone and vigabatrin and after being told they didn’t know much about side effects etc I sat crying my heart out all weekend but after one day the seizures stopped and never came back. Each day it has become easier to handle and the appointments got easier to face! We stopped the pred after about 4-5 weeks with a wean on and off and our baby came back to himself which was the biggest relief. We came off vigabatrin in August and never been on anything since.

Lee started to hit his milestones a little later than expected but to this day we have been lucky enough to win and now only see a speech and language therapist which has been a massive help. UKIST has helped me so much with how I’m feeling and how I’ve been able to cope.


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