Fascinating new use of EEG's ... Excerpt: “Research shows that almost 50% of children diagnosed with autism are actually suffering from hidden brain seizures.”
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Beach Week, 2010
This blog is dedicated to discussing the ups and downs of a family with a child who has Mitochondrial Disease. A blog seems to be a good way to share our experiences as a family and to hopefully connect to others with similar experiences.
Meet Roxie
Roxie turns 9 in November of 2011. Although she has had to work hard her entire life to learn basic skills like sitting up or using her hands, she is a happy little girl. Roxie has Mitochondrial Disease which has resulted in profound hypotonia, epilepsy, sensory integration disorder, cortical vision impairment, and fragile health. She loves music, her family, and interacting with other children.
The kids with their cousins
Beach Week, 2010
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2 comments:
Thanks for posting this, Phelps. I might repost it on my Facebook page.
What I find frustrating about this talk is the idea that Justin was "misdiagnosed" with autism - the thought that he didn't actually have autism at all but that he actually had a seizure disorder. It's this kind of wording and attitude that steals people's hope about autism and makes autism out to be such a horrible thing. Justin did have autism. Autism is merely a set of symptoms, not an end diagnosis. And these doctors found the cause for Justin's diagnosis and treated that cause, helping him to recover. That does not negate the fact that he had autism. It only explains why. Not all autism cases share a cause. Some comes from genetic issues, some from seizures, some from immune system issues, some from completely unknown causes... but if every time we help children with autism, we negate the fact that they ever have/had it, we deny future families who receive an autism "diagnosis" for their child the hope of recovery. Can all children with autism be recovered with what we know now? Nope. Definitely not. But some can, and all parents deserve to have that hope and to know that they should continue to seek to learn the cause of their child's diagnosis so that they can treat their child's symptoms most effectively and help their child as much as they possibly can.
On further thought, the same thing is probably happening again. The cause of Justin's autism is now his seizure disorder. But again, that's a symptom. So now we are treating his seizures, and all the doctors can rest - until new symptoms of whatever the underlying condition arise. Should we treat the symptoms? Of course. But should we stop here? I don't think so. I think we should then try to find out what's causing Justin's seizures. Is it genetic? Metabolic? Does he, perhaps, have mitochondrial disease? And if so, what can we do to help with that? I know that that idea is familiar to the Sprinkle family.
What can we, as a society, do to help Western doctors continue to dig more deeply to find, treat, and prevent root causes of these conditions?
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