Growing clavicles? (saethre-chotzen)

[Satori]

dd was not born with clavicles, it was one of the anomalies that allowed them to quickly dx SCS within minutes of seeing her at 5 months old. She's 26 months now and today I noticed something, she's grown clavicles! They were not there a year ago but no doubt about it now they are. Explains why she's no longer folding herself in half while sleeping lol, man that was creepy:)

[mckennasmum]

wow!

[craniomommynbaby]

That is fascinating! I am curious about this. Were the clavicles totally absent, or were they partially present? If she did not start growing them, what were they going to do?

[cheryl2]

That's amazing! I would be interested to hear what the docs say.

[beccad]

Very interesting!

[dannlark]

Wow! I'd love to hear what the Dr.'s have to say about that!! That's amazing!!

[Abby'sMom]

At my sister's wedding last month I met her new husband's aunt (an 80+ year old character!). She came up to me and said "I heard about your daughter and I just wanted to let you know that my husband and all of my children had the same thing and they turned out just fine." I said "Oh really...They had craniosynostosis?" She said, "Yes they were born with big soft spots". So I explained that Abby's soft in front was very thin because her coronal sutures were fused. I asked if her children had surgery on their skulls and she said "Oh no, they didn't need surgery they were just born with big soft spots." She went on to say "Now, was she born with clavicles?". At this point I'm thinking... :crazy but I'm humoring this little old woman and told her that Abby does have clavicles. So she says "Oh good but she will probably have an extra row of teeth that will need to be removed...my husband didn't have his removed until he went into the military." Now I'm really thinking :crazy:crazy I was polite and just said it sounds like your children may have had a different condition than my daughter. She said the official name and "cranio" was in there but all I heard was..."something cranio something". It was a crazy day and I didn't get to speak to her again but I did try to research what her kids might have and I'm fairly certain it is hereditary "cleidocranial dysplasia/dystosis". Interestingly patients can have a coronal fusion in addition to other skull areas with large soft spots. I'm amazed her kids didn't have surgery so I'm thinking they didn't have the bi-coronal aspect of this syndrome. She did say something about them "growing clavicles" which at the time sounded really weird to me but after looking it up and now reading your post I'm wondering if your little one simply had undeveloped (dysplastic) clavicles which have now begun to develop properly...How awesome!

Below I have cut and pasted one thing I found about cleidocranial dysplasia taken from the FACES website. The link to the site is www.faces-cranio/disord/CCD.htm (http://www.faces-cranio/disord/CCD.htm)


What is Cleidocranial Dysplasia?


Cleidocranial Dysplasia (cleido = collar bone, + cranial = head, + dysplasia = abnormal forming) , also known as Cleidocranial Dysostosis and Marie-Sainton Disease, is a condition characterized by defective development of the cranial bones and by the complete or partial absence of the collar bones (clavicles). Characteristics include:

Delayed closure (ossification) of the space between the bones of the skull (fontanels)
Premature closing of the coronal suture
Protruding jaw (mandible) and protruding brow bone (frontal bossing)
Wide nasal bridge due to increased space between the eyes (hypertelorism)
High arched palate or possible cleft palate
Short stature
Scoliosis of the spine
Why did this happen?
There is no link between anything the mother did or did not do while she was pregnant and the occurrence of Cleidocranial Dysplasia. It is transmitted as an autosomal dominant trait. The cause is not yet known, but several chromosome abnormalities have been linked with this syndrome, including chromosome 6p21.

Will this happen to children I have in the future?
If both parents are unaffected, it is called a spontaneous genetic mutation and the chances of having another child with it are very small. If one parent is affected, it is called an inherited genetic mutation and there is a 50% chance that a child will have it. Of all the cases of Cleidocranial Dysplasia, one-third are spontaneous and two-thirds are genetic.


What kinds of problems could my child have?


In addition to the physical characteristics common to Cleidocranial Dysplasia, your child may have the following problems:

Dental abnormalities - failure to lose the baby teeth (deciduous) at the expected time; slow eruption of secondary teeth; extra teeth; delayed or absent formation of teeth
Ability to touch the shoulders together in front of the body
Wide pelvic bone
Loose joints
Hearing loss and/or frequent infections
Will my child need surgery?


Due to the fact that the dental problems are the most significant complications, appropriate dental/orthodontic work is vital. Some of the suggested treatment options include the following:

Apply dentures over the unerupted teeth
Teeth removal as they erupt, because very little bone structure would be left if the supernumerary, impacted, and unerupted teeth were all extracted at once
Some doctors suggest that the removal of primary or supernumerary teeth does not promote eruption of unerupted permanent teeth. In addition, permanent teeth may be difficult to extract due to malformed roots.
New advances in procedures to treat Cleidocranial Dysplasia are constantly being developed. Be an advocate for your child!

How do I get help for my child?
Your child should be treated by a qualified craniofacial medical team at a craniofacial center (http://www.faces-cranio.org/MedCent.htm). Currently, FACES has information on thirty-two craniofacial teams located in 20 states, the District of Columbia, and Canada. This is by no means a comprehensive list of all the craniofacial teams. Please contact FACES for details.

Am I alone?
No! There are many families and organizations who will be glad to talk with you and help you with information and support. Don't forget books, videos, and websites. This listing below will get you started.

FACES: The National Craniofacial Association
P. O. Box 11082
Chattanooga, TN 37401
(800) 332-2373
Email: faces@faces-cranio.org (faces@faces-cranio.org)
We provide financial support for non-medical expenses to patients traveling to a craniofacial center for treatment. Eligibility is based on financial and medical need. Resources include newsletters, information about craniofacial conditions, and networking opportunities.
Online Cleidocranial Dysplasia Support Group
To join this new and growing online computer discussion group, go to the following link and follow the instructions for joining: http://health.groups.yahoo.com/group/Cleidocranial_Dysplasia/ (http://health.groups.yahoo.com/group/Cleidocranial_Dysplasia/)
MUMS
National Parent to Parent Organization
c/o Julie Gordon
150 Custer Court
Green Bay, WI 54301-1243
Toll-free: (877) 336-5333
Website: http://www.netnet.net/mums (http://www.netnet.net/mums)
This organization helps you get in touch with parents in your area whose children also have Cleidocranial Dysplasia.
Office of Rare Diseases
The Genetic and Rare Diseases Information Center
P. O. Box 8126
Gaithersburg, MD 20898-8126
(888) 205-2311
Fax: (202) 966-5689
Email: gardinfo@nih.gov (gardinfo@nih.gov)
Web site: http://rarediseases.info.nih.gov (http://rarediseases.info.nih.gov/)
Excellent web site for finding information on a variety of craniofacial disorders, particularly very rare ones. Information specialists are available to answer your questions. Telephone operation is Monday - Friday, 12 pm to 6 pm Eastern Time. Email or fax requests for information will be answered within 5-10 working days. U.S. Mail requests will be answered within 5-10 working days. NOTE: The center does not give medical advice, provide treatment, or diagnose illness.
National Health Law Program
1101 14th Street, NW, Suite 405
Washington, DC 20005
(202) 289-7661
Website: http://www.healthlaw.org (http://www.healthlaw.org/)
Provides extensive information on health care law affecting families with children who have special health care needs.
Children with Facial Difference: A Parent's Guide.
Written by Hope Charkins, MSW. Order from Amazon.com (http://www.amazon.com/Children-Facial-Difference-Parents-Guide/dp/0933149611/ref=sr_1_1/102-4319643-8834501?ie=UTF8&s=books&qid=1174594287&sr=8-1) if you cannot find it in your local bookstore.
Excellent resource for parents to help them cope with medical, emotional, social, educational, legal, and financial challenges presented by facial differences of their children.
The following are some useful internet sites concerned with Cleidocranial Dysplasia:
http://www.nlm.nih.gov/nlmhome.html (http://www.nlm.nih.gov/nlmhome.html)
This U. S. National Library of Medicine website has a descriptive article on Cleidocranial Dysplasia. Enter the words "Cleidocranial Dysplasia" in the "Search" box. The toll-free telephone number is 888-346-3656.
http://www.dental.mu.edu/oralpath/lesions/cleidocraniadys/cleidocraniadys.htm (http://www.dental.mu.edu/oralpath/lesions/cleidocraniadys/cleidocraniadys.htm)
This site has some pictures illustrating some aspects of cleidocranial dysplasia.
http://www.faseb.org/genetics/ashg99/f181.htm (http://www.faseb.org/genetics/ashg99/f181.htm)
This site contains an article entitled "A Natural History of Cleidocranial Dysplasia".
http://cpmcnet.columbia.edu/news/dental/cdr97/silva.html (http://cpmcnet.columbia.edu/news/dental/cdr97/silva.html)
This site presents a case report on cleidocranial dysplasia.


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[Emarsynsmommy]

Thanks for posting that Mandy. How absolutely amazing!!

[Abby'sMom]

My new BIL's aunt was at the wedding without her immediate family so I didn't get to meet any of her children (his cousins) and I think her husband passed away. My BIL's family is from South Dakota so chances are I won't get to meet his aunt again but I'm hoping he may be able to share some pictures and give me a better sense of what "turned out just fine" actually means. Now I really want to know more about her kids "growing clavicles"!

I'm kicking myself for not spending more time talking to her but it really was a hectic, whirlwind kind of a day...
:shrug

[cheryl2]

Very interesting! There's so many conditions and syndromes.

[craniomommynbaby]

It is interesting that so many of these syndromes share the same symptoms. None of my siblings had cranio, but now I am wondering more about them possibly having the syndrome. They all have dental problems from one brother's major cyst that is requiring multiple surgeries to my sister having a baby tooth stuck under another tooth. Simon has a highly arched palate, and I have scoliosis. I was "double jointed" as a kid but I could not fold my shoulders together. I did amaze people with the way my arms would wrap multiple times around bars. :sigh: I would still love to have answers, but I am so scared of what will happen in the future with health insurance and such. Thanks for sharing this. I am going to ask around to see if any of our family members could fold in half as babies.

[Satori]

wow, I never got any notification of replies! I need to dig out her old xrays, I know at one point it looked like they were starting to grow but were kinda short and half formed on the xray but she was in respiratory failure at the time so we were a bit more concerned about everything else going on, I just remember seeing it the xray while it popped up on the computer when I was behind the wall watching. She was able to totally fold her shoulders together and touch them under her chin when she was born.