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Thread: Has anyone seen this before?

  1. #1

    Question 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!!!

  2. #2
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    Hi laurajay,
    Welcome to the forum! I do know that sometimes people that have cerebal palsy can get epilepsy. I have worked with students in public school that have this medical condition.
    Often when a person is under a lot of stress or very tired it can trigger a seizure (sz.) for a person. Ask your brother if when these tremors happen if he ever notices seeing colors
    in his eyes or if he gets a nervous feeling in his stomach. If this is happening he is having a simple partial sz. also known as a aura sz. My best advice to you is to have your brother
    see an Epileptologist at an Epilepsy Center which are at large hospitals or university hospitals. These Drs. specialize in epilepsy along with other neurology disorders and can run
    a few tests on your brother to find out for sure what is going on. Have your brother start taking vitamin B12 1000 mcg. once a day and keep track of these possible sz. by writing
    down what time they happened along with a description of them on a calendar. Take note if there's a low pressure in the weather because this can sometimes trigger a sz. for
    some people. I wish you and your brother the best of luck and May God Bless the both of You!

    Sue

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    ((((((Laurajay)))))) ~

    Welcome to BrainTalk!

    Sue is an expert and has given you some terrific advice and ideas.

    It sure sounds like seizure activity, perhaps myoclonic with the spasms. Are these spasms in any way convulsive?

    Have you ever checked his pupils during an episode? Are his eyes moving at all?

    How does your brother feel after an episode? Is he tired, lethargic? Does he sleep? Does he have a headache? Does his head feel dull/foggy?

    Has an EEG been taken during an episode? Has the doctor witnessed any of these episodes? I recommend videotaping them to present to doctors, so that they can witness what is actually occurring.

    Did the doctor wean your brother off of the Epilim and Frisium? If he doesn't think he's seizing, why keep him on seizure meds?

    Could his episodes correlate to his meds? Some times anti-seizure meds can actually cause seizures. Or side effects mimicing seizures.

    Has your brother had a thorough blood work up, checking thyroid, vitamin and mineral levels, sodium, potassium, and blood chemistry? Might be a clue there.

    Did the neurologist mention what other explanations/conditions he's exploring in lieu of epilepsy?

    As you can see, I have no answers, but lots of questions!

    Please join us on the Child Neurology forum, where there are other parents of children/young adults with epilepsy. Perhaps they will have some ideas or experience to help you.

    Keep us posted!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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