Our rainbow baby boy Callum was born two weeks late in the middle of August 2018. I had a fairly easy-going pregnancy until our 20-week scan when we were told Callum had some extra fluid in the right ventricle of his brain, but it was nothing to worry about. I continued to have monthly check- […]
News
July – celebrating achievements
Every month we have a special thread in our closed support group to share and celebrate the milestones (and inchstones) that our children have achieved. Today they were just so lovely I asked for permission to share some. These little warriors just quietly keep on trucking despite their challenges. Heartwarming! It’s hard to […]
Our June warrior – and a silver lining for UKIST
Our June warrior is the daughter of Alice Goldhill who has since joined us as a trustee and has been invaluable in pushing forward our work to improve awareness within the medical profession. Daisy was born in October 2018 after an uneventful pregnancy. I remember feeling so lucky that our third child was here, and […]
Kamala represents UKIST at the Shape Network Epilepsy Research Conference
UKIST is grateful to Kamala Murugesu, one of our fabulous group admin team, for representing us at the epilepsy research conference On Tuesday 17 May I attended the Shape Network’s first in-person conference on Epilepsy Research at the Francis Crick Institute, London on behalf of UKIST. It was a great half day conference filled with […]
Pioneering Study Discovers an Underlying Cause for Infantile Spasms and Points to a Novel Therapy
UKIST were really excited to hear news this week from an American study, funded by the charity CURE epilepsy, of a potential new treatment for infantile spasms, currently at the stage of success in animal models. The currently available treatments work for about 75% of patients initially (though some later relapse) but have significant side […]
Our May warrior – Violet
When we found out we were pregnant with our second child we were delighted! We had always wanted a sibling for our 3-year-old son Ronnie. The pregnancy progressed as normal, with no causes for concern, until we attended a routine scan at 36 weeks. The sonographer noticed something unexpected on our daughter’s brain. The ultrasound […]
Fantastic news – NICE publish new guidelines for epilepsy
Today NICE have published their new guidelines for assessment and treatment of epilepsy. The old guideline did not make any specific provision for infantile spasms, lumping all first seizures together and recommending an assessment within 2 weeks. UKIST are honoured to have been a stakeholder in developing and reviewing the new guidelines, which recognize ( […]
UKIST annual meeting report
SATURDAY 26 & SUNDAY 27 MARCH 2022, VIA ZOOM Attendees: Alice Goldhill, Amy Dowding, Jenny Rawling, Louisa Freer, Michelle Scoffield, and Samia Sanders. Apologies: Belen Robbins. UKIST AMBITIONS Trustees unanimously agreed to maintain the current charity ambitions, with no amendments: Educate – to improve awareness of the symptoms of infantile spasms amongst the medical […]
All the P’s – Participating in parent priority projects and priority setting partnerships – parents informing research
Our Trustee Jenny Rawling writes Wearing my trustee and parent ‘hats’ I’ve had the privilege of taking part in two workshops this week that aim to hear the voices of all those affected by epilepsy in order to inform research priorities. The first was hosted by the James Lind Alliance and British Paediatric Neurology Association […]
Our April warrior – Oliver – infantile spasms as a result of HIE
Our warrior this month is Oliver who was diagnosed with a birth injury called HIE – hypoxaemic ischaemic encephalopathy (lack of oxygen – restricted blood flow – affecting the brain). HIE is one of the major underlying causes of Infantile spasms. Half of children who have HIE which involves neonatal seizures, damage to certain areas […]
