Warrior is back!

Olly was born on the 5/10/2011 weighing a healthy 7lb 14ozs. Our little family completed. The only little man on our side of the family so spoiled rotten. Olly was doing well. Seemed to be meeting all his milestones and was a happy baby. But around the end of March 2012 things changed. He wasn’t his normal happy self. He seemed to cry no matter what we did and then that’s when we noticed him make a strange startle type reflex whilst sitting on his granny’s knee one day. We shrugged it off thinking maybe he felt he was going to fall. We didn’t see it again for a while but I knew something wasn’t right. He just wasn’t himself. Then he started to do these reflex movements again and all as he did was want to sleep. He was regressing and showed no interest in anything any more. Every time upon waking he would have these movements. I took him to the GP with no video evidence at this time. That hadn’t crossed my mind. The GP really wasn’t sure so advised us to take him home and see if we could get videos of it. She referred him to paediatrics. At this stage he was having several episodes a day, getting longer and longer. Then he had an episode that lasted 11 minutes. I got an appointment at the GP seeing a locum this day armed with my video evidence!! It was a miracle. She knew what it was and straight away had Olly admitted to our local hospital on the 11th April. He was observed that night and the next day he had his EEG. We were then approached by his consultant who pulled the curtain around us and told us that it looked like he had an epilepsy that would be better dealt with in the specialist hospital in Belfast. We were transferred straight up that same day via ambulance to the Royal Victoria Hospital Belfast for sick children where we met with his consultant and received the diagnosis of infantile spasms. The world just fell from beneath our feet!! We were devastated and with very little information turned to google!! Not good and really wished I hadn’t!! There was nothing positive about infantile spasms!! We felt so lost, scared and alone!! On the 14th April Olly had his first ACTH injection. The following day he had a nasty seizure which required buccal midazolam and that was it!! That was his last seizure. He carried on with the ACTH and then weaned onto prednisolone. 1 week later we were sent home under the care of our district nurse!! It was not an easy path and one that will haunt me forever but slowly and surely we started getting our baby boy back!! He was smiling and giggling again! He started reaching all his milestones again. A bit delayed with his speech and language but 2 years of therapy he came on really well. He had a bit of a setback 2 years ago when he developed partial seizures which they put down to constant illness with his tonsils. He had his tonsils removed in September 2016 and from that day he has just thrived. Fast forward to today I have a cheeky, funny, gorgeous chatterbox of a boy who is spoiled to within an inch of his life!! He is my little miracle and I am so grateful we had a quick diagnosis allowing him to be treated quickly!! That really was our saving grace!! He is in P2 in school and just loves it! He is requiring quite a bit of help at school at the moment but just like everything he is getting there in his own sweet time!! I’m amazed in the last 6 years how much more awareness is around for Infantile spasms. There was very little out there when Olly was diagnosed!! This group is great and a real asset to those that have set it up!! May it continue to thrive and help parents out there on what is one of the loneliest, darkest and scariest times you can possibly go through 💜


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