Our October warrior – Gene

Gene’s story is written by his father, Ryan

Me and my fiancée Charlotte wanted to share our little man’s story, Gene Gardner.

It was November 2020, Gene had been at Charlotte’s mum’s that afternoon, as we had been for some food. When we picked him up her mum said that he had been doing some odd movements with his head and his arms. We weren’t overly concerned at this point, as we knew that babies can have odd movements and phases that they go through, so we said we would monitor it and see how he got on.

We took him home that night and these sudden clusters of thrusting his head forward and throwing his arms out began becoming more frequent. We were struggling to come to terms with what it could be. Being the worriers that we are (and I know people say you shouldn’t Google things but we did) we found that Gene had the symptoms of infantile spasms. After watching videos on YouTube we had convinced ourselves that this was what we were seeing.

We rang 111 and explained everything to the operator and he came back to us with a recommendation that we should go to A&E at our local hospital with Gene. Charlotte had been videoing Gene every time he had a cluster of seizures and could show these to doctors at the hospital. The videos were then sent to a specialist at Manchester Children’s hospital who advised that Gene should have an EEG to see if any hypsarrhythmia was showing (a chaotic brainwave pattern characteristic of IS) as he was pretty sure that Gene had Infantile Spasms. After having the EEG no signs of hypsarrhythmia were showing so we were told that it would have to be repeated ten days later. Over the ten days Gene’s spasms became worse and a lot more frequent happening both while awake and sleeping.

Gene had a repeat EEG and was diagnosed with Infantile Spasms that day, 16th December 2020 at 10 months old. Treatment started that evening, three weeks of a steroid called prednisolone and three months of vigabatrin which he was slowly weaned off successfully. He gained a lot of weight with the medication and his face really swelled more than anywhere else. He was a different child, he was so quiet and didn’t show a lot of interest in things, which was quite worrying.

Gene stayed in hospital for a few days until doctors were happy medication was working. This was right in the middle of the pandemic, meaning only one parent could stay with Gene in hospital, even hospital visits were at a minimum, and Charlotte stayed with Gene throughout that period, and we swapped through the day so I could have time with him. This was really hard for us.

Gene completed his medication, and within that time had various tests to check he had no other underlying medical conditions. All came back clear. We were told by his consultant that we can’t really be certain whether the spasms would return or whether Gene may develop other forms of epilepsy as he grows. We were told that only three children including Gene had been under the epilepsy team for infantile spasms at Tameside Hospital in the year he was diagnosed and every child is different, but Gene had really good chances of normal development due to a very quick diagnosis.

Roll on nearly two years, Gene is a very happy and healthy boy. He is two and a half years old now, he has been at nursery for 13 months, his development after his medication was quite delayed and he struggled socially and around other children at first. His speech has been slightly delayed but he can now say lots of words and starting to put two words together.

Words can’t express how lucky we feel to be Gene’s parents, we really do believe this could have had a different outcome without such a quick diagnosis. Me and Charlotte cannot be thankful enough to all the nurses and Gene’s consultant at Tameside Hospital for all their hard work and dedication to helping Gene on his journey. The last seizure Gene had was on 16th December 2020 before he started his treatment, and we count our lucky stars every single day. We can only hope that nothing will ever return, but we just take each day as it comes and indulge in Gene’s love and happiness.

We are so happy to share Gene’s story and hope this spreads awareness on the importance of fast diagnosis. If you see any kind of sign or symptom, please just get it checked out. It is better to be safe.