Warrior of the Week

Introducing Jacob our #Warrioroftheweek no:4 .

Jacob started having spasms from about 4/5 months old.
He suffered very badly with reflux to the point he couldn’t do tummy time or even lay flat on the floor without vomiting, even hours after milk. He was on gaviscon but we had tried every reflux medicine and nothing would really work.
Jacob started to lift both arms up and repeatedly, I thought it was strange. It happened once or twice and I asked the health visitors when I got him weighed, I asked our speech and language therapist and I even asked Drs… ‘reflux’ was the response I got from every single person! Obviously being a first time mum I listened to the professionals, I had never seen anything like what he was doing before so I just assumed they knew what they were talking about.

The movements became more frequent, they turned into jerks, he would wake up in the night and have them. He would sleep for hours after having them and pretty much sleep all day. I started to see him regress in his development, he wouldn’t play with toys, he couldn’t use his hands, he wasn’t interested in anything, he would never interact with anyone. I knew that something wasn’t right, I had an idea to video Jacob doing these movements on my phone and took them to our paediatrician and straight away she knew.
We had a EEG within a few days and it was confirmed and he was diagnosed with Infantile Spasms/ West Syndrome.
We hadn’t heard of this condition, what it meant, or what was going to happen, we only had google and that scared us to death.
Jacob was put on a high dose of prednisolone and vigabatrin and within 24 hours the seizures had stopped ***touch wood*** we have been seizure free since the 23rd January 2016! He got weaned of the vigabatrin September 2016 and he is not on any medication for seizure control.

Since that day we have worked so hard with Jacob to help him develop and progress and I’m so happy to say he is doing AMAZING!! He is nearly 2 and still has a severe developmental delay but he is doing things I never thought was possible. He is a very cheeky monkey and his personality is so funny and loving! He makes us all laugh and loves giving kisses.
I pray everyday for the seizures to stay away and I will never not be able to worry every time he makes a sudden movement but we will not let IS win!! Jacob is too strong and too determined!!



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