Has anyone seen this before?
Hey all. My brother, Tom, is 21 and was born with Cerebral Palsy. He also has an intellectual disability, and what we refer to as 'wobbles'. We always believed these 'wobbles' were Epileptic seizures, and he has been on Epilim & Frisium for over 10 years. Recently we have been seeing a neurologist to find out exactly what they are, and we have been told that Tom's 'wobbles' are not Epilepsy as they do not follow a specific electrical pattern during an EEG or MRI. The neurologist has strictly taken Epilepsy off the table, and is trying to find other theories. However I am still of the belief it is Epilepsy. I am a Disability Support Worker & am studying a Bachelor of Special Education, I'm not saying that makes me a professional, but in my studies I come across a lot of research that I believe matches Tom's 'wobbles'.
For Tom, a 'wobble' is where his whole body tremors, however it appears to stem from his head. He doesn't lose consciousness, but he does become disorientated & usually have to stop what he is doing. He can talk through-out, and usually asks someone to tell him a joke or sing him a song. It appears to be triggered by extreme emotions, but sometimes they happens without any known reason. They can last anywhere from 3 minutes to 45 minutes, and can happen in sequences where it doesn't completely disappear but varies in severity for an excessive amount of time. And they happen many times a day. He finds lying down on his side helps, and he gets a lot of muscle spasms, especially in his neck & core. He can also feel when they are 'coming' and when they are 'going'.
I was just wondering if anyone has ever heard of or seen anything similar. I'm not in agreeance with the Neurologist that it isn't Epilepsy - especially if he cannot provide us with any solid reasons to explain these 'wobbles'. Any help or direction would be greatly appreciated!!!
For Tom, a 'wobble' is where his whole body tremors, however it appears to stem from his head. He doesn't lose consciousness, but he does become disorientated & usually have to stop what he is doing. He can talk through-out, and usually asks someone to tell him a joke or sing him a song. It appears to be triggered by extreme emotions, but sometimes they happens without any known reason. They can last anywhere from 3 minutes to 45 minutes, and can happen in sequences where it doesn't completely disappear but varies in severity for an excessive amount of time. And they happen many times a day. He finds lying down on his side helps, and he gets a lot of muscle spasms, especially in his neck & core. He can also feel when they are 'coming' and when they are 'going'.
I was just wondering if anyone has ever heard of or seen anything similar. I'm not in agreeance with the Neurologist that it isn't Epilepsy - especially if he cannot provide us with any solid reasons to explain these 'wobbles'. Any help or direction would be greatly appreciated!!!
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