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delayed myelination and mito

Posted: October 4th 2009

asasway

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HEy Everyone,

This is my first post. My 2 year old son recently got diagnosed with mito complexes 1 and 3. I don't even know where to start. He just started walking about 2 weeks ago, which is a true blessing. HOwver, he is still only making some sounds and is still very behind on his speech and language. SInce the beginning of his life, he has had difficulty. I have many other questions to ask but I guess my first one is with his developmental delay. Does anyone else have or know of a mito case in which the brain has delayed myelin. Is this mito causing his developmental delay, if so, what can I expect??? I know that no one knows what to expect with this disease. Any insight would be appreciated. THanks so much.

asasway

Dear asasway, I will say

Submitted by arktjk on Mon, 10/05/2009 - 12:10am.

Dear asasway, I will say first that these diseases are extremely variable. On that note, I would imagine the mito is causing the developmental delay. My one child did eventually have "diffuse abnormal myelination" on the last brain MRI she had a couple months prior to death as well as significant atrophy and old basal ganglia infarcts (I just pulled out her MRI report and read through it), although all of her MRI's before that never had said anything about the myelination. I guess for her it happened late in the disease. She had a very severe case of mito so her brain was a mess. Not everyone will have that. BUT, my son has very minimal issues and does well so far, so that is why I say it is so variable. I'm not sure if this helps you, but I thought I would offer what I know from our experience.
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