Special Needs

Loss of white matter in the brain

Does anyone have any experience with a loss of white matter showing up on an MRI?  I was told that it is a mild to moderate loss by our developmental pediatrician.  Our next step is to meet with a neurologist at the Children's Hospital over 2 hours away.  I won't be able to make an appointment until after Christmas. 

Our genetic appointment was moved up to literally the day after Christmas, so I don't know if we have anything genetic going on too.  His blood work and urine that the developmental pedi ordered came back normal.  I'm not sure what all he tested for, but I think this rules out anything metabolic/mitochondrial for us.

I'm just really curious what this means for us, and I hate waiting.  I was hoping for some insight from anyone.  He has hypotonia, GDD, and no interest in food/food refusal tendencies.

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Re: Loss of white matter in the brain

  • Disorders of the Corpus Callosum is a loss of white matter, but it is not a progressive loss, basically the corpus callosum did not grow or grew inportioins or too thin. Nate has Hypoplasia of the Corpus Callosum and is considered moderately affected. There is a huge spectrum of outcomes for callosal disorders.

    I have a friend with two sons who have a non-progressive form of leukodystrophy. Basically what they have for myelin is what they have. It won't get any worse or any better. One boy is more affected than the other. They both also have hearing loss. It is considered genetic, but they have not found the genetic change for their issues.

    You really have to wait and see what you are working with. Worrying and googling before you have a diagnosis will take up a bunch of energy. 

    You could try and get the radiologists report and read that. I would contact medical records. What your dev pedi told you seems really vague and not helpful at all. Perhaps they were vague because they didn't want you googling and making yourself worry more than necessary.

    The brain is such an awesome organ and can be affected by genetics, environment and either good luck or bad. It's a "wait and see" life and a true lesson in patience. Hugs.

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  • My son (16 months) has agenesis of the corpus callosum and a few other brain abnormalities. He is mostly delayed in gross motor development. The geneticist can't find a genetic link. The neurologist told us to come back only if he has a sezieure. Everyone is saying its a waiting game.

    Assembly said it much better than I could have. The brain is amazing. The unknown is the hardest part. Hang in there, and keep on keepin' on.

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  • DD has pretty significant white matter loss. She's severely delayed physically and is moderate to severely delayed in all other areas.

    Unfortunately, it's all a waiting game and providing as much input to re-route neuro-pathways to get as far as possible. That's why EI is so important.

    To positively spin this, despite all of DD's issues and delays, she's progressing by leaps and bounds every day and learning new things that we didn't think she would be able to. 

    There are a lot of unknowns, like the PPs said. There just isn't enough known about the brain and it truly is a remarkable and amazing organ. Keep doing all you can for your son and try not to consult Dr. Google.


  • My youngest has delayed mylenation.  The neurologist won't do another scan to see where he is with it as of now though.
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