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Author Topic: Overwhelmed and needing information  (Read 5888 times)
jaclyn4
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« on: June 15, 2010, 04:34:28 PM »

My four year old son had an MRI last week and it came back as a rare abnormal white matter pattern. I don't understand what this means and the dr is not being very informative at this point. I am feeling so overwhelmed. My son was born full term with no complications. Around three months of age I began to worry because he was not smiling or cooing. He sat up a few months late, walked a few months late. The right side of his face drooped and seemed to be weaker.  At his third birthday he couldn't blow his candles out on his birhday cake. He was unable to say mama or daddy or anything else. He was in speech therapy and began to make progress. Now at almost five he is saying everything quite clearly and he is putting four and five words together consistently. Everything has improved. Even the right side of his face is balanced out now with the left side. Everything I have read on the internet so far seems as though children with a white matter disease get progressively worse, but my little one has only gotten better and better. We are going next week to have an EEG done and bloodwork done for genetic testing. Does anyone know of a white matter disease that gets better? Does anyone know of a child that the symptoms have improved rather than gotten worse? I am so confused and I don't know what to think. Any help or information would be so greatly appreciated. Thanks. God bless.
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Ruschj
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« Reply #1 on: July 03, 2014, 04:45:57 PM »

Have you gotten any more information?  I see many years have passed. I am just starting my journey with my daughter,,,
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