Luca’s story is written by his mum Leah
Luca was born in January 2023 a day before his due date. I had a straightforward pregnancy & a peaceful home birth with no complications.
Luca was developing well and reaching the usual milestones on time up until around 5 months of age. For a few weeks he had not been his usual happy self – he would cry a lot and would be really hard to settle, he stopped smiling and wasn’t interested in his toys. We went from having a really chilled out & happy baby to one that was really miserable. I had just put it down to teething as my eldest son had a really tough time cutting his first tooth.
Around 2 weeks after the change in his personality I noticed Luca doing some strange movements whilst feeding him. I thought they looked really odd but continued to feed him until a few minutes later they started again, I decided to get my phone out and record the movements in case I needed to show someone. After the movements had completely stopped I googled and the first thing that came up was the UKIST YouTube video showing examples of Infantile spasms. My heart dropped as I realised this looked very similar.
We headed straight to A&E where thankfully we were taken seriously after showing them the footage I’d earlier recorded. We were sent home after a few hours and booked in for an EEG the following morning. The EEG came back as abnormal but Luca didn’t have the typical hypsarrhythmia pattern present, so the consultant was unsure on whether to start the treatment for IS. Luca hadn’t had any more of these movements after the first few 24 hours earlier so it was decided to start him on Keppra to treat his seizures.
After a few days we noticed very, very slight spasms – if you blinked you would miss them! We voiced our concerns to the consultant who upped his Keppra dose. However over the next few days the spasms started to ramp up, they started happening very frequently and they became really aggressive with his arms coming up to his head and his legs coming up to his chest. I knew then it was definitely Infantile Spasms. I had posted a few videos of Luca on the UKIST Facebook group and I had lot of helpful comments confirming my fears that it did look very much like IS and the lovely admin really encouraged me and gave me that push to get the correct treatment for Luca.
One week after the first EEG we were in again for another which showed that the chaotic pattern had gotten worse (although it still didn’t show hypsarrythmia) but this was enough for the consultant to diagnose IS and admit us and start the correct medication to treat IS. Even though I knew deep down what was coming, getting that phone call and confirmation really broke me.
We were super lucky that the treatment stopped Luca’s seizures pretty much immediately and we were only in hospital for 2 days before being sent home with a lot of medication. This period of time is a blur to me (even though it was only last year), I was in survival mode and all my focus was on making sure Luca was having all the correct medication at the right time and constantly studying him to make sure the spasms were staying away. The effects the medication had on him were really hard to watch but I felt super thankful to the UKIST Facebook group as I had looked through so many posts on there that I knew what to expect and that I also knew that all of these side effects were temporary and I would eventually get my smiley baby back … which we did! It was such a lovely feeling and I had missed his personality so much!
Luca is 18 months now and he’s doing really well. We have had a genetic diagnosis which doesn’t explain IS & are still awaiting some results to come back but overall he is amazing and very healthy. We’ve had no spasms since starting treatment on the 3rd of August 2023 and feel so lucky. I’m so grateful to UKIST for having such a helpful & resourceful website and Facebook group, without these I would have gone into this journey very clueless and a lot more scared than I already was.