Dante was born in 2017 at 38 weeks completely healthy and he was a happy baby. When he was 11 weeks old we started to notice strange movements. At first it seemed like a regular startle reflex but then we noticed that the movements came in clusters and were far too frequent to be just a reflex. One night not long after it started we took him to A&E. He was admitted and we were extremely lucky that a paediatric epilepsy specialist was working that night. Within a couple of days Dante had had many tests including an MRI, lumbar puncture and a genetic blood panel. He was diagnosed very quickly with infantile spasms and put on steroids.
He was on the steroids for 16 weeks and they did work and stop the spasms quickly but as we weaned off the steroids the spasms returned. Over the next two years we tried many drugs, vigabatrin, epilim, keppra to name a few and none of them worked. By the time he was 2 years old he had regressed to the state of a newborn baby. At this point, his doctor suggested that we try the ketogenic diet. We were desperate for something to work so we did. At this point he was having up to 20 seizures a day. Within 2 weeks of starting the diet his seizures dropped to 3 a day and he started developing again and after six months of being on the diet the seizures stopped completely. Dante has been seizure free since June 2020.
Unfortunately Dante’s development was quite severely delayed and he has been diagnosed with global delay, and hyperactivity with autistic traits. His motor skills have now caught up and are in line with other children in his age group. He is pre-verbal and his understanding of things is at the level of a toddler however he is a very happy determined little boy. We never got an answer as to why Dante developed infantile spasms despite extensive testing, including extra genetic blood tests. He is a quite the mystery and a little miracle. He is now six years old and enjoying life. We found UKIST on Facebook just after Dante got diagnosed and joined the group and got a lot of absolutely invaluable advice and support from other parents and the UKIST trustees.
