Our November warrior – Kayden’s story

Kayden’s story has been written by his mum Stephanie-Leigh.


This is our little warrior’s story. Kayden is only ten months old and has already been through so much. I started to notice little head drops when Kayden was four months old. We were initially turned away by the doctors saying he was just gaining balance in his neck muscles, returning to the doctors again they told us to wait for a referral that could take months!

During this time I found the UKIST website and support group and did some research. The group encouraged me to go to A&E as I was confident the symptoms Kayden was displaying were very similar to everything I had read on the website. The head drops became more frequent until an episode lasted longer than 30 minutes, in that time I contacted my mother distraught and we went straight to A & E.

We were seen by numerous doctors, and then admitted to hospital. Kayden’s episodes were constant and he was having seizures from the time he woke up to the time he went back to sleep. During our time in the hospital Kayden had numerous blood tests, a lumbar puncture, a CT scan and a EEG. After a referral to another hospital where another sleep EEG was performed, Kayden was finally diagnosed with infantile spasms.

Kayden regressed in all of his development – our happy little boy even stopped smiling. He was prescribed prednisolone, and he became extremely unsettled and cried constantly. Due to the steroids he gained a huge amount of weight in which the doctor said was normal.
Everyday life had to continue as normal but became very hard for all of us, when out shopping children would point and laugh at Kayden calling him fat and the parents response would be “she needs to lay off the food”. This upset us so much knowing that people were judging Kayden not knowing what he was going through.
His seizures continued so vigabatrin was introduced and he was slowly weaned off the prednisolone, he became extremely sleepy for a while until his body became used to the vigabatrin.

The UKIST group has been so helpful during this time – explaining the medication and the side effects and sharing their stories with us.

Kayden has now been seizure free for two months, he has lost weight and is slowly reaching his milestones again and learning more and more every day. He has also returned to his happy, bubbly, smiley self. Our true little warrior!