Miles’ story is shared by his mum, Katie.
Miles was born May 2023 following a straightforward pregnancy and birth. We went straight home with our perfect little 8lb 6 boy..
Life was great for the next 9 weeks until Miles was admitted into hospital with urosepsis. Our world was turned upside down, with our baby being taken for endless tests. He was immediately started on IV antibiotics and after a 10 day stay in hospital he was doing so much better. The following few weeks Miles appeared back to himself. We began to move on and went on his first trip abroad when he was 4 months old.
We returned from our trip and he had his 16 week vaccinations late. From that day, he screamed to the point of exhaustion. He was either asleep or screaming. We took him to several doctors but nobody could work out what was wrong. Then, he began having subtle head drops in clusters, which quickly turned into the very typical jack-knife IS. More trips to the doctors and twice to A&E. Sent away with a diagnosis of colic, but we knew it was more than that.
I am so grateful on that Friday evening whilst googling his symptoms, I came across the UKIST video. We went straight back to A&E where we told the doctor we were sure it was infantile spasms, and luckily were taken seriously. Unfortunately being a Friday night we had a long wait for his EEG on Monday morning, which after this, Miles was immediately started on prednisolone and vigabatrin.
It was the most difficult thing we have been through as a family but with support from family, friends and the wonderful UKIST group we got through those early weeks and the spasms stopped in 24 hours. We were so grateful but knew the chances of relapse were high.
Life carried on in a way we couldn’t have imagined, but we were beginning to see small amounts of progress with his development. Miles began to sit up unaided at 9 months then crawled at 10 months and walked at 17months. Life began to feel a little easier and Miles is growing into the most amazing affectionate boy who we are so proud of.
We still face lots of challenges and have speech therapy as Miles is non verbal at 2, but he is able to follow directions well and communicates his needs in his own way. We are starting some basic signing with him, and he will also starts nursery this year.
We currently have no cause for Miles IS, his genetic testing came back clear after some initial issues with his bloods not being sent correctly so had to start the process all over again, and his initial MRI was clear. We do not know if his IS is due to the sepsis and have been told we will likely never get an answer, but we are very grateful to the fantastic neurologist and epilepsy team at QA hospital Portsmouth.
We would also like to thank UKIST for their ongoing support, Miles’ dad ran the Brighton marathon raising over £3000 for the charity and we hope to be able to continue to raise money again in the future.
