This month’s warrior is Seren – her mother Cat shares their progress as they have reached the milestone of four years after her diagnosis. We’d like to extend a big thank you to Cat and to others like her who remain in our support group years after their diagnosis to offer support to other families. Seren’s story highlights both the need for ongoing therapy for children who have had infantile spasms as a baby and the difficulties that Covid-19 has caused in accessing therapy and assessments. UKIST is helping our support group families during the pandemic by providing access to speech therapy, physiotherapy and occupational therapy online, thanks to a grant from the National Lottery.
We are still having ongoing research done because, as Seren’s neurologist says, she isn’t a textbook case for the way things happened with her West Syndrome. She remains a positive example of how resilient children are and what they have the potential to achieve after West Syndrome. I continue to stress to others that one of the reasons this outcome has happened was due to recognising infantile spasms early, looking up the signs of it and getting her seen ASAP! Seren is delighted by everything and has a beautiful innocence about her. She’s quite “young” for her age but it only adds to how endearing she is. Seren is above her age in her maths abilities and her recognition of letters has been excellent since 18ms old! She is currently receiving speech and language help via video sessions which I pre-record and we analyse and break down together. Her speech is very good now but her understanding is lacking and there’s still an underlying suspicion of ASD (autism spectrum disorder). Unfortunately, at this time, it will not be officially diagnosed before she starts school; everything has come to a halt due to coronavirus, on top of the heavy backlog they already had with assessments.
Following Seren’s diagnosis I have written a blog to continue to encourage others to spread the word about Infantile Spasms/West Syndrome.
So please do continue to educate and inform others as to what this seizure condition looks like, so they can have a chance at achieving the best outcomes for their child too. It can be so subtle and manifests in a different way for each child.
Please share the following links and info and have a read too!