Ilmarie & Eddie

My name is Ilmarie, I am married to Alex and we live in Cheshire with our two sons.
Our second son, Eddie, is just a week shy of turning three.

Ilmarie Braune.jpeg

Eddie was diagnosed with Infantile Spasms at 7 months old. Infantile Spasms is a rare, and neurologically catastrophic childhood epilepsy. Infantile Spasms are also known as West Syndrome, and are often referred to as being ‘small seizures with big consequences’. Indeed, Infantile Spasms is a much more serious than the type of generalized seizure that most people associate as epilepsy, and it is absolutely vital to try get the seizures under control quickly, and the initial treatments are aggressive. Typically a child with Infantile Spasms has a chaotic brainwave pattern called hypsarrhythmia, which causes loss of skills and brain damage. Within days of his diagnosis Eddie was put on a treatment plan of a combination of corticosteroids and vigabatrin. It was a terrifying time, the medications were so tough on Eddie, he gained weight rapidly, was unsettled and slept for extended periods, he stopped laughing or even smiling, it felt like we could see Eddie being lost before our eyes. Unfortunately the seizures continued to increase and so over the next year we started on a path of trying lots of the main different anti epileptic medicines, in different combinations, but nothing really worked. In that time Eddie was also assessed for a possible hemispherictomy, and also put on the ketogenic diet.

Over time Eddie also started having other seizure types, myoclonics and focal seizures. And we were told it was highly likely he’d develop more seizure types over the years. On the anniversary of his seizures starting Eddie was still having an average of 7 or 8 clusters of seizures/spasms in a 24 hour period, some lasting up to 40 minutes with over 60 individual spasms.

Nothing was helping, despite him being on a cocktail of incredibly strong drugs by this point.

So we made the incredibly hard decision to try him on a cannabidiol (CBD) oil. After three months we saw almost no visible seizures, and Eddie blossomed. Sadly they did slowly return, although they remain dramatically reduced. Currently Eddie has around 1 mild cluster lasting just a minute or so on waking from a nap, and some myoclonics, and his most recent EEG shows that he still has modified hypsarrhythmia.

Eddie has been on CBD (not medical cannabis) for 18 months now, and we have successfully weaned him off all but one of the medications he was on, and he’s brighter and happier and finally making some tiny developmental gains. However the seizures have caused/continue to cause profound developmental delays. At the age of nearly 3 Eddie can’t walk, talk, crawl or even sit up unsupported. The seizures which remain still present a significant obstacle to his development. We want to be able to try medical cannabis. We believe that his seizures can be reduced further with a higher THC or THCa content. We also desperately want proper medical guidance from health care professionals who have experience in working with medical cannabis. Up to now we have self administered CBD and it’s been a daunting experience.

We know great things can be achieved but without further guidance and access to medical products we really are shooting in the dark.

Alastair Moore