Our July warrior Betsy – three and thriving!

Our July warrior’s story is written by her mum, Sally

Betsy was born by Caesarian section, I had a normal pregnancy with no complications and have three other children who were over the moon to be big brothers. Everything was going well, she was hitting milestones and developing as she should. Around Christmas time we started to notice that Betsy was less engaged, not smiling as much and her development seemed to pause. In January I took her to A&E as I just had a feeling something wasn’t quite right, I had noticed a few odd movements but nothing major at this point. I was sent home as they couldn’t find anything wrong. Over the next few days the scrunching type movements became more noticeable and after some googling I came across an IS website, I watched videos and they were exactly what my little baby was doing. Armed with multiple videos I went back to A&E, once again despite showing them videos and mentioning IS they told me she wasn’t having seizures and sent me home again. Not happy with this the following morning I emailed the videos to my GP. He called me straight away and finally someone was listening and he sent me straight to the children’s ward. I remember sitting with my baby and sobbing at her bedside as I just knew something was really wrong. I was admitted straight away, the following morning we had an EEG which confirmed West Syndrome. We started steroids that evening and stayed in hospital for 5 days. We had an MRI done and what seemed like test after test and multiple blood tests.

I was devastated, why me? However her spasms stopped completely on day two of medication, on day five we were sent home with what seemed like the entire pharmacy of medication and I felt totally overwhelmed and out of my depth. Over the next few months I couldn’t take my eyes off her, I recorded every movement that I thought odd – there were quite a few but none of them turned out to be seizures and they all fizzled out over time. Betsy had Physio and OT input as her development had suffered and I think this was the hardest thing for me knowing what she should be doing but she couldn’t do any of it. Fast forward a year and a half and with a lot of hard work at home she was signed off from both of these and she eventually started to walk at 23 months, which was a long time coming.

She turns 3 this month and is thriving – she’s been seizure free and medication free since February 2022. Her speech is still behind but she is constantly making progress. I’m so proud of her and everything she has accomplished. It was a very dark time and one that I will never forget and in a way had lost all hope thanks to google!

We have never found a cause for her IS despite extensive testing including full genetics. I would like to thank UKIST and the many parents who have responded to my posts you are all on this journey and every story is extremely different but all as important.

My little warrior is a very independent, strong willed child and this is what has got her to where she is today. Her determination to not give up even though her consultant in the beginning didn’t give us much hope only spurred us on to prove that anything is possible.