What exactly is Immature Myelination?

August 23, 2007 1:07 PM

What do you guys know about "immature myelination" in infants? I'm trying to learn more about this condition and what it means for the future of the child. Specifically what sorts of special care will likely be necessary.

I know you aren't doctors, but I'm wondering if anybody has personal experience that might give a less clinical description of what to expect and what is required.

posted by anonymous to health (4 comments total)

I can't, sorry. I can say that the book "What's going on in there" (about infant brain development) discusses the myelination process heavily (search inside returns references on 46 pages). The book overall is great - fairly scientific and detailed but accessible to the layperson. It will likely not answer your questions directly, but may help by describing the effects of myelination.
posted by true at 3:03 PM on August 23, 2007

First of course I'd like to give you my deepest regards. I cannot begin to imagine myself in your position, not having any experience with children with special needs, much less those with quite rare conditions. But for whatever reason, your question did raise my curiosity, and so I did a little research on both the clinical aspects of demyelination, dysmyelination, leukodystrophies, etc, as well as on what less clinical resources are out there. Mostly what I found, as I had a slight notion of before, was that not many people even know what myelin is, and much less about conditions relating to it. As you may have found, in mosts people's minds, if they even know what myelin is, myelin disorders can basically be classified into two groups: MS, and everything else. Having MS, or having a loved one with MS is obviously difficult enough. But experiencing the effects of other myelin disorders, whose rarity makes it very difficult to find anyone else experiencing it must be extremely difficult. All I can personally offer to you is my best wishes. The only other advice I have for you, which I'm repeating from basically the only person to post on this myelin disorder board at the Braintalk Communities, is if you can't find anyone out there with the same condition as your child, then reach out to anyone else out there experiencing other myelin disorders, or any other neurological conditions at all. While you're not all in the same boat, you may be in similar ones, and though many details may differ, you can still offer eachother support. And that's not to say I do not offer my support, just that I have no personal experience with infants with special needs. So my email is in my profile, and I'd be glad to share with you any other sites I came across (which mostly just had "clinical descriptions), or to help you in any other way I can. Again, I offer my sympathies, best wishes, and good luck in finding others in similar situations to your own.
posted by gauchodaspampas at 3:11 PM on August 23, 2007

Immature myelination is not a specific diagnosis; it is more likely to be a radiologic (MRI) or autopsy finding.

There are two areas in the brain and spinal cord. One has a grey appearance and is full of the main cell bodies of neurons, the cells that make your brain go. The other part of the brain and spinal cord has a white appearance. No neurons' cell bodies are there in the white matter, but the axons - the long cylindrical processes that the neurons reach out to communicate with other neurons - are there. In a simplistic way the white matter is where the 'wires' connecting one neuron to another are routed.

Myelination refers to the fact that these saltwater-filled cylinders are sheathed in layers of myelin, a fatty electrical insulator whose presence makes them into much more efficient bioelectric conductors. Myelin wraps onto these axons in an orderly process over a period of years, starting well before birth and ending in the fourth decade of life.

There are a bunch of disorders we neurologists refer to as "white matter diseases of infancy." Krabbe disease is one that I learned of as being sort of the 'prototype' for understanding the progression of this kind of disease. However, there are many others, some much less bad.

It is hard to predict how an individual infant is going to do. However, in my experience when there is an obvious defect of myelination on a scan before age 1 year, the prognosis is always guarded at best.

I am very reluctant to say more because I know that behind this question somewhere there is a real infant and a real mother and I am not willing to address myself to either of them over the Internet. These conversations need to be had in person, with someone who is knowledgeable and compassionate, over a period of months before it all sinks in.
posted by ikkyu2 at 3:20 PM on August 23, 2007 [2 favorites]

follow-up from the OP

Thank you all for your answers.

As ikkyu2 noted, this was a finding in a recent MRI. She suffers
from a number of other problems as well, but this problem is newly
diagnosed. She's about a year old, but I'm told that she has the
brain of a baby half her age.

My understanding is that there's about a 10% chance that she will
recover and develop normally anyway, and that there isn't a known way
to increase the odds.

true: I just ordered the book you recommended, to better understand
what the problems are. I'm assured we're using very good doctors,
and they did their best to explain it to me, but the combination of
unfamiliar terms and shock caused much of the information to be lost.

gaucho: thank you for your sympathies, and for the simple idea of
looking for online forums. It hadn't occurred to me to seek them
out. It's greatly appreciated.

ikkyu2: thank you very much for some insight, and especially for
giving me a way to look at what the progression may be, even if it
may not be the precise disorder. Even though there is little I can
do, it's a comfort that at least I might be able to prepare for some
possible futures.
posted by jessamyn at 7:27 PM on August 23, 2007