Lucio’s journey is shared by his grandmother Pauline.
When our second grandson was born he was healthy and developing well. Our nightmare began when we noticed strange movements which the consultants said was colic. As a paediatric nurse I wasn’t happy with this diagnosis as I thought he was having spasms or fits. Luckily a couple of brilliant paediatricians from Birmingham Heartlands hospital listened to my daughter and recognised he had infantile spasms and broke the news to us. The immediate reaction was to look everything up on the internet and we were horrified as it implied he would never walk, talk or develop. The next few months went by in a whirl with brain scans, lumbar punctures and blood tests. He began prednisolone and vigabatrin and ballooned up so much we could hardly recognise our once happy little boy. He began to develop and smile again after he was weaned off prednisolone but the spasms were worse than ever. Epilim was added to his list of drugs with no reduction in seizures and so the next step was the ketogenic diet which he was on for two years. This reduced his fits from 20 to 30 clusters a day to between 2 and 4. He then came off the ketogenic diet and once again seizures increased and was put back on vigabatrin and epilim capsules.
A couple of years ago he had right sided brain surgery to resect the frontal lobe. This helped a bit with him only having a few seizures in the day but then he started drop seizures. Development wise he was non-verbal, cheeky, and running around, so although delayed he was the happiest little boy and always smiling, but he began to get injuries from the drop seizures and so faced his second lot of surgery to resect more of the right side of his brain which would affect the movement on his left side. Only four days post-op he is drinking on his own and trying to pull himself up – he is an amazing 6 year old. As grandparents it is so difficult because your baby and her baby are going through such trauma and the only thing you can do is offer support. The decision to consent to brain surgery was the hardest one in my daughter and son-in-law’s life – it was either try and stop the seizures and risk his motor development or leave him with intractable epilepsy. They decided to take the chance, and we just hope and pray it was the right choice and we get our happy loving little boy back. We thought his big brother Rocco would miss out due to all the attention Lucio gets but he has turned into the most well-grounded, happy, caring little boy who idolises his brother. It has made him accepting of other children’s differences. His comment tonight as Lucio faces three months in hospital for extensive physio is “Nanny it’s not home without Lucio – I want my brother back.” Lucio is amazing whatever the eventual outcome and brings so much love to our family.
Love Nanny x
