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mommyof4boys
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Delayed mylenation and corpus collosum questions
mommyof4boys
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While talking to Chris' PT yesterday she said that the functions were similar. The corpus collosum's job was to transmit signals from one side of the brain to the other and mylen sheet's job is to transmit signals from one area to another (if I understood her). Could THIS be why the quack of a developmental pediatrician thought Chris lacked the corpus collosum? She said his facial features would be different than they are if he lacked the entire portion of his brain. I'm just really confused and trying to NOT grasp at straws....
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Re: Delayed mylenation and corpus collosum questions
I'm not sure if you remember carlinlp (lyndsay) from the nest, but her little boy has mylenation issues and she has done A TON of research on just about everything mylen related, so I bet she could answer any questions for you. Here's her blog...
https://thestradtnerfamily.com/findingournewnormal/
And Elias Parker, Born 3.5 weeks early 12/20/2011
FINALLY!!! After 7 years of infertility!
Your PT is misinformed. The myelin sheath (which develops past the infancy stage into toddlerhood) and the corpus callosum (which deveolps before birth) are distinct in terms of form and function, and no qualified radiologist would confuse the two.
Also, there is no "face" that goes along w/disorders of the corpus callosum (whether agenesis, hypoplasia, or partial agenesis). While many affected persons may have trouble with midline tasks, such as clapping, stacking blocks, etc., or coordination, the degree to which this is true varies. For example, my son never had problems crawling, or crossing midline, but he did have to get the hang of stacking blocks (when he started doing this, it was almost like he was drunk and kept missing the first block upon which to stack the second).
Have you scheduled the MRI, or at least made an appointment w/pediatric neurologist to review the MRI (can't recall what stage you were at w/this)?
I agree that the "face" would not be due to the cc issues, but rather possible chromosomal issues. There are certain features that children with chromo issues often (not always) have in common which (lower set/smaller ears, wider bridge of nose, etc.). However, a child could have a cc issue and NOT have a chromo issue either (there are other reasons why a cc does not form in utero).
I also cannot remember where exactly you are in the process, but an MRI is pretty much what you need to know what you are looking at. It has been a LONG time since I looked at LA's MRI reports (like almost 2 years), but there is something sticking in my head that they could tell that she did not have delayed myelination (so the MRI would cover both concerns).
Now, fthefuturemrskudla, you have me curious...what is your son's condition? LA is c-acc (as your child, never has shown midline issues, crawled and walked on the later end, but still within "typical" range. Our biggest delay right now is in expressive language. And of course, this darn aspiration issue).
Ben had delayed mylenation at 6 months but when we had a repeat MRI done at 2 it was matured and ok.
Have you had an MRI done yet?
Well, you can look at LA's picture and decide for yourself if she has the smaller squished face--and she does not have a corpus callosum. Her bridge is a little flatter and her ears are smaller, but I don't think her eyes are small or her features are "squished." FWIW, my geneticist also told me that dysmorphia is literally in the eye of the beholder and joked that Angelina Jolee's lips are considered dysmorphic, yet people consider them one of her best traits (I find them scarry myself LOL).
Ok, honestly, I would find someone to look at the MRIs you already have. A cc does not grow after birth so it is either fully there, partially/thinly there, or not there at all. It wouldn't have changed since the previous MRIs. I am so frustrated for you!!!
She looks similar to Chris. The geneticist from Children's Hospital of Boston had someone look at them and the genetic study we're doing is having someone look at them. I know structure of the brain will not grow and remove itself after he has been born. I am just really confused and am frustrated hearing all kinds of things from different people.
After the kids go to bed tonight I'll post some more current pictures or you can go on my blog and look.
Does Ben have hypoplasia of the cc? My son has this.
First of all, your daughter is adorable. I love "all done." That's how my son does it, too (although he doesn't always mean it!).
Our geneticist told us, too, that most models are dysmorphic and then he commented on my "bi-temporal narrowing and slight micrognathia."
Re: DS (15 mos), he has an expressive delay, too (no intentional words but makes certain sounds in certain contexts) but he also has hearing loss (severe in the right ear, profound in the left). He met all his gross motor milestones pretty much at the average time, except he isn't walking yet: he stands by himself, cruises, and takes 3-5 steps. He's a really, really fast crawler though.
I can see why you are so frustrated. I agree with J.I.L. Get another reading on both previous MRI's for the mylenation.
You need to rule out the tethered cord and the only "definitive" way to do this is another MRI of the spine.
The PT has already given you misinformation. Mylen is the insulation around the nerves in the brain. The insulation help signals to travel where they need to go and not get hung up or crossed. You can imagine the nerves as a bunch of bare copper electrical wires. Without the insulation, any wires that are crossed will deliver the signal to the wrong location. Alzheimer's is a disease of the mylen sheath. The nerve insultaion degenerates and the brain's wiring goes helter skelter.
I am also not sure how up on neurology a GI would be. The answer he gave you sounds like a cop out to me. He should have said "I have no clue what is going on based on my expertise. Perhaps you should pursue this neurologically." So my third point of advice is to be very careful about what you take away from conversations with people who have no business making the types of diagnosis they are offering you.
The last MRI we had done on Nate was when he was 6 months. Delayed mylenation was mentioned by our neurologist but he also said there was progress from his first MRI done at birth. So there is no reason to think he wouldn't fully mylenate eventually. He has Hypoplasia of the Corpus Callosum (thin). He is not crawling yet but scoots on his behind. He can wiggle around on his tummy but his upper body strength and coordination is just not ready to put everything together yet for a crawl. Cognitively he is about 3-4 months behind.
As far as facial features Nate is dysmorphic. Even though he has his corpus callosum, his eyes are wide spaced, ears are lower, & his chin is smaller. I don't think you can definitivey say that facial crowding means one thing and wide set eyes means something else.
The neurologist and GI were talking back and about things. The GI said that she felt his nerves and muscles weren't working properly. If he had 3 or more accidents in a week we were to call and she'd send him for the MRI. I called and left a message for the neurologist yesterday and will end up calling again today since he didn't return the call yesterday. The last time I called to ask a question it took him 2 weeks to answer. (This would be for Matthew.)
As far as Christopher, I'm confused and frustrated. We are seeing a geneticist/developmental person in March at Columbia. She happens to be the head of the study we're doing which we will be traveling on site in April or May. They are also re-reading the MRI's that we have. His first showed delayed mylenation and the second saw no change. They said there was no point of redoing it since it wasn't changing.