March is National Save your Vision Month – and vision is a hot topic for families of children with infantile spasms for two reasons; Firstly, Vigabatrin, one of the first line and most effective treatments for infantile spasms, has the potential to cause toxicity to the retina and permanent loss of peripheral vision. A diagnosis […]
News
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 […]
Medical education – don’t forget the bubbles
UKIST are very grateful to Dr Alice Goldhill, a GP partner and one of our trustees, for contributing a medical education segment to the paediatric education site ‘Don’t forget the Bubbles’ to help educate other doctors on infantile spasms. The piece can be found here Infantile Spasms – Don’t Forget the Bubbles (dontforgetthebubbles.com) Alice is […]
Our February warrior Zack – stroke survivor and infantile spasms warrior
Zack’s story is written by his mum, Libby. A stroke around the time of birth or in the first few days of life is one of the most common underlying causes of infantile spasms developing at some point in the first year. Approaching the end of a completely normal pregnancy something was suddenly not quite […]
BPNA conference 2024
Our UKIST chairperson Jenny Rawling represented the charity at the recent British Paediatric Neurologists Association annual conference in Bristol, together with other representatives of UKRET charities (UK rare epilepsies together – a new umbrella group to encourage cooperation between the small epilepsy charities). The conference is a great opportunity to network with some of the […]
Our January warrior Dante – a success story for the ketogenic diet
Dante was born in 2017 at 38 weeks completely healthy and he was a happy baby. When he was 11 weeks old we started to notice strange movements. At first it seemed like a regular startle reflex but then we noticed that the movements came in clusters and were far too frequent to be just […]
The BEE (brain development in early epilepsy) project
The Brain development in Early Epilepsy (BEE) study aims to track the development of babies with epilepsy. The study is funded by an Epilepsy Research UK and Autistica fellowship, and will be co-sponsored by King’s College London and Guy’s and St Thomas’ NHS Foundation Trust. UKIST members were involved in focus groups in the early […]
Our December warrior Caleb
Caleb’s story is written by his mum Adela. A small proportion of children with infantile spasms later develop Lennox-Gastaut Syndrome – characterised by multiple seizure types and characteristic EEG abnormalities. Seizures in LGS are often difficult to treat. Caleb’s story illustrates the difficulties families with drug resistant epilepsy are still having accessing medical cannabis, despite […]
Epilepsy awareness month Fun run launches 1st November!
Tickets for our Fun Run go on sale 1st November at 6:00am! This is a virtual event that you can complete anywhere you choose. Simply purchase your ticket, complete your distance and send us a screenshot from a suitable fitness/tracking app as evidence to receive your medal. We are also hosting optional leaderboards for those […]
Our November warrior Ivy-Rose
Ivy-Rose’s story is written by her mum Kylie My beautiful Ivy-Rose was born November 2021. Pregnancy was fine until told I had polyhydramnios and couldn’t go into labour naturally so had to be induced at 38 weeks. Having two previous pregnancies with natural births I was a little nervous. I ended up with covid […]
