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New,,HI! Anyone had plagiocephaly as result of Cleidocranial Dysplasia?


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  #1  
August 27th, 2009, 05:59 PM
benandali's Avatar Mega Super Mommy
Join Date: Jan 2009
Location: Ohio
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Hi, I'm Mary (23) and my son who is now 20 months was born with cleidocranial dysplasia.Very rare diagnosis but pretty interesting at the same time. You can google it if you want to find out more but my son has NO collarbones which doesn't affect him one bit, and he still has a very large soft spot on the top of his head.

His head still grows to teh sides instead of to the back. His head was flat by the time he was a month old. He finally got a helmet when he was 6 months old and he still wears it at night to keep his round shape.

Just thought I'd say hi and post a few pics of my son before treatment and after one month! His head looks pretty much normal now but I can't find a pic of his recent head shape to post.

These first two are side and top view shots of my sons head before treatment:


His face is actually at the very bottom! The wide part is the back of his head.


With his helmet at 6 months old:



After one month of helmet wearing:

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  #2  
August 28th, 2009, 02:40 AM
Generally Crispy
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welcome tot he group. He sure is cute! It looks like his helmet has helped alot.

Do you know how much longer he will have to wear it?
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  #3  
August 28th, 2009, 07:11 AM
benandali's Avatar Mega Super Mommy
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No idea! he's going to be 2 this winter and we can't keep him in it at night forever!! we will have a meeting w/ the craniofacial team around then to talk about it!
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  #4  
August 28th, 2009, 11:42 AM
BensMom's Avatar Ephesians 4:29
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Location: The Lonestar State
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WOW! I've never heard of that. It's very interesting to me (I love all things medical ). Looks like the helmet is great. Does it bother him, or has it become a "part" of him? Does he try to take it off?

My son is also Ben, but his name is Ruben (after his Pawpaw) rather than Benjamin.
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  #5  
August 28th, 2009, 01:37 PM
benandali's Avatar Mega Super Mommy
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Ooh I like calling him Ben and then you can still keep the family name! It doesn't bother him at all. It's so funny. When he's tired, he'll start waving goodnight and go get his helmet! He stands perfectly still and falls right to sleep in it!
We joke that he wont be able to sleep when he's older unless he's in a helmet!..poor kid!!
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  #6  
August 28th, 2009, 07:12 PM
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what a cutie! Looks like his helmet really helped! Post a recent pic!
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  #7  
August 29th, 2009, 03:53 PM
KrystalB's Avatar Platinum Supermommy
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Wow, what a difference the helmet has made in just a month! Wonderful!
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  #8  
September 12th, 2012, 01:11 PM
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I have Cleidocranial Dysplaisa. I am now 37. I just had a son born with the same disease. Apparently we have a unique mutation of the disease. Fyi as he gets older the lack of collar bones will effect him. I have found things that cause you to use the arms in rotational, continual motion cause tendinitis in the shoulder. Also the circulation gets cut off when I hold my arms up. I have more pushing strength, quite a bit actually but hardly any pulling strength. My sons head looks a lot like your son's did. His fontanelle move very easily. My head was a lot softer when I was born. My skull has heal up and my fontanelle are not shifted forward like your sons. I hope by now his soft spot is gone. Has it effected any of his other joints?
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