Barnaby’s story has been written by his mum Charlotte
Our beautiful baby Barnaby was born on the 19th of January 2023, happy and healthy and not a worry in the world. He was doing really well but at around 5 weeks old we started to notice weird eye movements, they were so quick after he awoke or when he was sleepy. These movements progressed ever so slightly so then other people were able to notice. At 8 weeks old on the 23rd of March 2023, Barnaby woke up at around 6 in the morning. He had around 9 episodes back to back, they looked so severe and he started crying out after each one. We had never seen anything like this before so we took him straight to A&E. We had filmed these episodes, so we were super thankful as Barnaby was absolutely fine after the hour long journey to the hospital.
A&E did a couple of tests on him but they were happy he was stable, it was not until we showed them the videos they took it all seriously. He then had some more episodes in A&E and they then took Barnaby straight for some tests and admitted him onto a ward.
We had never heard of Infantile Spasms before but a doctor mentioned this was a possibility and that we could wait for tests to come back or start him on Prednisolone and Vigabatrin straight away. We chose for the latter as they had become more frequent and severe meaning he needed to be hooked up to oxygen.
Once we received his diagnosis we found the UKIST support group and threw ourselves into every help and information leaflet we could. Barnaby continued with his medication and for a couple months was stable with only the odd few seizures. In October in 2023 all testing had come back negative and Barnaby had developed well. He then started to experience spasms again and Atonic Drop seizures. The mixture of both of these cause multiple injuries and multiple hospital visits. We adjusted medications and tried to control them as much as possible, we ended up adding in two more medications, but nothing controlled them.
After more testing and scans, still nothing came to light. The hospital did not want to repeat an MRI as he was still too young. In January 2024 Barnaby regressed in his skills, he could no longer say ‘mama’ or wave and point, it just all vanished overnight. We noticed he was favouring his left side, again after pushing the hospital they just came back with ‘He is just left handed’. We knew that at the age of one, this was not right, we fought so hard they eventually gave him an MRI.
With his development still regressing and him not using his right side we hoped this MRI would tell all. The seizures and injuries did not stop, Barnaby was given a new safe space bed from UKIST as he had chipped his tooth on his cot, we bought him a helmet and tried to keep him as safe as possible as he grew. We were still adjusting and adding in new medications but still couldn’t gain the control, at this point Barnaby experienced over a 100 seizures a day.
The MRI results finally came back and diagnosed Barnaby with Focal Cortical Dysplasia in his left frontal lobe, which meant that any medications we would try may never work for him and surgery was his best hope of gaining seizure control. Barnaby has picked up a lot more diagnoses along the way but is finally on the waitlist for epilepsy surgery in 2026.
We are still unsure the cause of Barnaby’s FCD, he has been through the wringer with testing and trying out medications. He is now nearly 3 years old and is currently taking 5 anti-epileptic medications twice a day. He is still experiencing seizures everyday with his current being around 30+ a day.
The best piece of advice we have is just to record everything, we would have been turned away from A&E had we not had the footage, not many people have heard of Infantile Spasms so getting the support and help as urgently as possible is important. Even now just recording his seizures helps to provide the hospital with as much evidence and information on his epilepsy as possible.
Barnaby is the happiest and most resilient little boy, he brings so much sunshine to our lives and he is able to power through every battle he faces. We are so grateful for all the support we get on this journey and long may it continue. We are not sure if we will ever gain seizure control but one thing is for certain, he is living life to the fullest.
Epilepsy surgery is often the best option for children with drug resistant epilepsy where there is a physical cause in the brain for the seizures and should not be viewed as a last resort. Every child diagnosed with infantile spasms will have brain imaging at diagnosis and this is usually repeated at 2 years old for children where medication has not controlled the seizures. Once the brain is more developed subtle lesions may become more obvious. 30% of epilepsy in children is medication resistant and it’s important that access to alternative treatments like surgery, ketogenic diet and medical cannabis is prioritised. You can learn more about epilepsy surgery at The epilepsy surgery alliance
