Our March warrior Isaac

Isaac was born in July 2022 after a pretty smooth sailing pregnancy (although in the middle of a heatwave!) He was a happy baby who was an amazing sleeper

In January 2023, I noticed some strange movements when Isaac woke from a nap. After being dismissed by the GP who told me “it is not a seizure, his whole body wasn’t affected”, I was taken seriously 2 days later by another GP at the same surgery who told us to go to hospital. He was diagnosed as having focal epilepsy at 6 months old.

We got these seizures under control with medication but ultimately in March 2023 he was experiencing some new movements that were involuntary when he woke from his naps. We took him back to A&E where we were seen by a doctor who told us that these seizures looked like a form of epilepsy called Infantile Spasms.

The next day, we saw the Neurology Consultant who witnessed Isaac having one of these episodes, along with watching many of the videos we had managed to capture at home. He told us that even without an EEG to confirm, he was sure that it was indeed Infantile Spasms and we should start treatment immediately. (Isaac loves to visit hospital at the weekend when there are less resources available!!)

The neurologist sat and spoke with us talking us through Infantile Spasms and what we could expect with Isaac starting treatment that day. As not only first time parents, but also people who hadn’t experienced anything to do with epilepsy or seizures before… it was a lot to take in. He scheduled an EEG and an MRI/lumbar puncture to confirm the IS diagnosis, and Isaac started steroids and Vigabatrin that same day.

We spent hours googling, worrying about Isaac and what this might mean for his future. That was when Jake came across UKIST, a lifeline group for families with children with the IS diagnosis and we were immediately welcomed with open arms. We can’t explain how much it meant to us to be able to chat to other parents who could understand what we were going through. No question we ask is ever too silly, and every little positive milestone Isaac hits is celebrated with us.

Isaac has been successfully treated for his IS now but it’s had a significant effect on his developmental progress even a year on. He also now has other seizure types & we’re trying to find that magic concoction of medication that will help reduce them. Next up is the ketogenic diet & possible surgery pathway.

We’re so lucky to have found UKIST & all the amazing families that are also affected by IS and epilepsy. Not a club any of us wanted to be a part of but we can all deal with anything thrown at us!! Isaac has remained his happy, cheeky self despite all he’s been through, and as his parents we couldn’t be prouder of the little fighter he is ❤️.    “

 

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