16/04/2026
Not a pleasant video but I like to raise awareness as part of our journey with Jack.
Infantile Spasms - also know as West Syndrome.
A rare and serious form of epilepsy. Usually consists of head drops or a “jack-knife” movement, coming in clusters and lasting up to 45 minutes.
This is usually caused by a chaotic brain wave pattern as we have seen in Jack.
It’s normally treated aggressively with a high dose of steroids, which we did in January last year. Sadly Jack relapsed and recently the spasms have returned more often and more intense.
The risk with the condition is that it causes a regress in development, but the biggest one for us is that it can lead to worse seizures with a potential diagnosis of Lennox Gastaut syndrome.
Jack already has a serious form of drug resistant epilepsy. We are on four different medications plus the Keto diet.
We are slowly building up to a higher dose of his newest medication, so sadly we have to wait and see if this helps reduce the spasms. If not, the next course of action is another aggressive treatment called ACTH which involves daily injections, very close monitoring and having to be very careful as it compromises the immune system.
Our worst fears are there every day, behind my smile, sarcasm, inappropriate humour, I grieve for what his life could have looked like, and for our uncertain future. Despite all of this Jack continues to smile and laugh and throw an epic tantrum which makes mummy and daddy very proud 💙
