Intro...Delayed Myelination

bellapup

Hello.  I introduced myself last year with a question about my daughter but haven't been back since.  In the year that has passed we have started several interventions, and have also had a few tests done to help pin point some reasons for her delays.  She just turned two on November 11th.  

A quick history...

She didn't crawl until 13 months, never cooed or babbled as an infant and also had troubles feeding..it's as if she didn't know how to work her mouth, she spits when she drinks (she has a really primative suckle), she still does not walk unassisted, has a few sensory issues (under registers things), limited expressive language...says hi, mama, and tries to say more.  She seems to understand most of what is being asked of her because she follows most simple commands.  She has been in EI for the last year, goes to OT once a week, and for the last month has been going to speech once a week.  We are working on signing, and she is catching on.   She mostly points and grunts to get her point across.

This summer she had an EEG to rule out seizures, which we never suspected, and the results came back fine.  She also had an MRI and the results came back stating that she has delayed myelination.  I'm now waiting on a referral to see a pediatric neurologist, and we will go back next summer for another MRI.  

Does anyone have any experience with delayed myelination.  As much as I try to avoid google, I can't find a whole lot of information on it.  

I should add that she is the sweetest, happiest little thing.  Delays or not, she is loved!

mommyof4boys

My youngest did. It's a fancy term for the brain not being folded enough. The more folds the easier to pick up skills. The more skills we pick up the more folds. In our case it was a result of a genetic disorder. I'd contact a neurologist ( if yo e not already), a developmental ped, and a geneticist. Chris had a micro array which showed up a 16p11.2 duplication.

ToastieSimons

Delayed myelination could also be caused by the fact that she is behind in her milestones.  Unfortunately, as PP said, it coincides with brain development.  It's the chicken and the egg question.  Is her late milestones causing delayed myelination or is the delayed myelination causing the late milestones?

FWIW, we had several neurologists tell us that myelination doesn't truly mature until about 3 years of age, and to have a diagnosis of delayed myelination prior to that isn't a complete worry.  It's why early intervention and therapy is so important in infants and toddlers.

I would definitely try to get in with a neurologist first step as you said you are. I also second the geneticist, although you may need a referral from someone else, such as your pedi or the neuro.  We were referred by our neuro.  We have never seen a developmental pedi.

bellapup

Thank you for the responses. I guess it sounds like I'm going in the right direction. I did ask about a referral to a geneticist, but my daughters pedi didn't think it was so necessary yet. He did say he would put in a referral if I wanted one. Maybe I will go through with it just to be safe. I'm still waiting on an appointment with the pediatric neurologist. They said it could take a while for them to look at her paperwork. I hate waiting!