Jude’s story is written by his mum, Louise.
April ‘23 kinda feels a lifetime ago, and just like yesterday too, as the memory is so fresh.
I had a gut feeling of ‘something is up, and then this is bad’. Jude’s diagnosis was quick in some ways. The first unusual movements or spasms were noticed on a Tuesday. He was diagnosed and started on steroids on Friday. I don’t look back as much to this period now, but that gut feeling was there longer than I would like to admit about his development and general form.
That summer was hard, Jude’s seizures weren’t stopped with steroids, and vigabatrin was started two weeks later. He was so disengaged, hungry and sleepy. Life stopped and the crisis and fear felt so intense. Hoping every spasm is the last one, and crushed again when it’s not.
Jude was admitted to hospital for a week in June, 2 months after his diagnosis, to start on the ketogenic diet (a high fat, low carbohydrate, dietician controlled diet shown to be helpful for epilepsy). Thankfully Jude has been seizure free since that July, 11 weeks in total of spasms. Oh my god, the relief after fearing it might never happen.
Initially we managed keto easily enough, I was always worried about how much he slept and that he was still quite disengaged. His vigabatrin wean was slow, and sleep was terrible at night. That period went on for months and months but actually improved when Jude’s calories were increased on Keto. Not a great moment realising he had been starving.
Jude got hand foot and mouth last year and was sick as well with hyperketosis (levels of ketones in his body too high) from not eating. After this period he was super hungry and I decided I wasn’t waiting for the dietican’s plan to increase his calories. He was having extra food, with lower ketones and was still seizure free. This led to the consultant agreeing that he could come off Keto.
Like all parents in thjis situation, I’m hyper focused on development.
My personal opinion (Neurology haven’t disagreed, only saving ‘it can happen’), is that vigabatrin in particular held Jude back.
During the vigabatrin wean at 15 months, he babbled for the first time.
When vigabatrin was ceased I could see his comprehension of language start to develop, this was maybe at 20 months.
Sodium Valporate is also stopped now.
Jude has just turned 2 1/2 years old, and his first words have come in the past month, he has about ten words along with animal sounds.
I used to read stories on the UKIST page. It really is so invaluable when times are tough. There’s always different stories that resonate depending on where you are in the journey yourself.
It’s a lovely support, along with the base of IS knowledge from the trustees. The diagnosis stage is a desperate time of looking for hope.
This current stage of fighting for services, and dealing with the unknown future is hard too. There are so many posts about delayed development and any milestones met are so so special.
I have to say the last few weeks have really led me to believe anything is possible. At 13 months Jude’s consultant said that ‘very few children with IS develop normally and Jude isn’t one of them’). At the time with so much unknown, it was a hard thing to hear.
Jude was assessed as having a global developmental delay and the cognition of a 12 month old when he was 2 years and 3 months. But look at him now and the progress being made. I won’t lie, the relief along with the joy and celebration is immense.
Thanks so much to the group and trustees, the emotions and the struggle is real. And thanks for for sharing Jude’s IS story. All the IS warriors are amazing.
