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New to LGS
Tue, 03/26/2019 - 12:32Topic: Lennox Gastaut Syndrome
Our son, now almost 17 months old, has been diagnosed with LGS. He is quite young to present as he has from what we understand. But we have known in our hearts from 4 months old, that something was different. He started with head drops seizures in Dec 2018 and was officially diagnosed in Jan. There is so much to read/understand while still trying to move on with every day life caring for him and our other children but we of course want to ensure we are doing what is best for him. We are currently on two medications, waiting for genetic testing to come back prior to starting a 3rd. He continues to have head drops but also started with tonic seizures over the past week which have been more scary. We are hoping ot connect with someone to could provide insight on having an affected child, especially one this young.