Meet Samuel - An Awesome Doose Warrior



After a totally normal first year Samuel had his first seizures just hours after his 1-year vaccine. They started as drop seizures and long tonic-clonic seizures during sleep. This was in October 2017.

First medication was Valproate. In March 2018 we added Lamictal. In April 2018 we added a Benzo called Iktorivil. Seizures became worse. We switched Iktorivil to Onfi.

In July 2018 we started keto. It was the best thing that far and after starting keto all drop seizures stopped.

We weaned Valproate in September 2018 due to bad ataxia. It helped some and did not make seizures worse.

For a long time now Samuel has seizures during sleep. 10-15 seconds of tonic/tonic-clonic seizures. His EEG is not looking that great but we see very good development at the moment. He is delayed in speech and has some motor skills issues but is a true fighter and never gives up!! He knows most letters and numbers and loves music. He has a great sense of humour and empathy. He is a great inspiration to everybody around him. We don’t know much about his future but every happy second counts.

Like our geneticist said: “Let Samuel be Samuel”. Nothing else matters.


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