delayed mylination/ dysmylination

Peanut78

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Anyone familiar with this....?

After initially thinking our son may be dyspraxic due to developmental delays especially in terms of gross motor and speech, an MRI has found he has delayed myliniation/ dysmylination (basically where areas of the the white brain matter has not yet mylinated, affecting how quickly messages are conducted to different parts of the brain). He is currentloy being tested to rule out a demylinating condition (where mylin had developed, but is disappearing, as opposed to not having developed yet), but the neurologist thinks this is unlikely as he is not regressing in terms of his development, just slower to reach milestones.

This has come as a huge shock, but we are now feeling more and more positive for everyday that passes, that he will lead a normal life even if is initial development may be slower. The mylination process may well still happen, and even if it doesn't it is amazing how neuroplasticity works with functions of brain being redirected to other areas. Our son is receiving occupational and speech therapy as well as physio every week. I feel I see progress every week. :cloud9:
 
I really pray it isn't demylination and it is yet to form. I know nothing about delayed mylination but wanted to offer you hugs and find out if you have managed to find any support elsewhere?
 
I really pray it isn't demylination and it is yet to form. I know nothing about delayed mylination but wanted to offer you hugs and find out if you have managed to find any support elsewhere?

Hi Emma, thanks for your reply :flower:

No, we have not managed to find any support in terms of understanding what this means and sharing experiences, doesn't seem to be much out there :shrug: Because we are on a private healthcare system here in South Africa it is largely left up to us to identify and commence OT, physio and speech therapy, which we have done.

At the moment we are trying to stay positive as he hasn't had any signs of regressing (looking back over the last 21 months), just been slower in his development. Of course the truth is that I am terrified of the possibility of him having a condition in which he may deteriorate. I am also scared this may have a long term impact on his cognitive abilities - something no one can tell at this stage.

I have days when I feel very positive this will have a good outcome and days (like today) where I am rigid with fear.

Being pregnant isn't helping. It's not clear whether this may be genetic or a fluke :shrug:

We have our next appointment with the paed neurologist on the 20th May, which will tell us the results of the tests for a variety of demyelinating conditions. Will update then, in the meantime we are also trying to see a separate paediatric neuroligist for a second opinion (our current PN initially told us he had a brain injury over the phone on a Friday afternoon, then told us she had changed the diagnosis after I fought to get a follow-up appointment 10 days later! Not that impressed :nope:)
 
Aww you poor thing. That is a truly awful thing to have to go through. I hope they get to the bottom of it soon. I know there is a charity called the mylin project but I don't know much about it. Xxx
 

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