My husband was born with CCD in Buffalo NY on May 2 1968. He was adopted so we don’t know about the family history. We are currently trying to find out information since this is a genetic condition. We have a 2 year old son with this condition. Does anyone feel as though the specialist that they see know nothing about this condition?

I have a suggestion. Find a childrens hospital and make an appointment with
their craniofacial clinic. If your going that far to see doctors…stop half
way in ohio and go to the Nationwide Childrens hospital here if you cant
find a closer one…OR you could contact this hospital and get them to either
consult with your doctor or at least give YOU the info you need. This
hospital is actually caring for over 500 ccd patients from all over the
world and they have doctors who are specialists in this disorder.

IF you want, here are the names
Dr.Lude- CCD orthodontist
Dr.Ruberg- CCD plastic surgeon (will deal with all skull issues too, only
need a neuro if there is a lypoma in the brain-like my son
Dr.Kang- CCD ENT
Dr. Atkin- CCD genetics specialist
Dr. Elkin- CCD neurosurgeon specialist
All of these doctors can be reached at the craniofacial clinic at

If only to get info for yourself. If you want more info from me or want to
ask specifics please feel free to write me personally. Please give me time
to respond as Im just 48hr post op for a hysterectomy and am having pain
control issues, so it might take a few days to respond.
----- Original Message -----
From: “walser”
Sent: Wednesday, January 23, 2008 11:24 PM
Subject: [cleidocranial-dysplasia] CCD

HI -

I am sorry that I don’t think that I know your name. :slight_smile:

Anyway - thanks for sharing - I think that you are on the right track to
have YOU decide when to see the Dr’s next - :slight_smile: That was quite the run-around.
(And yes - we have had a bit of that too!) Your husband sounds funny… LOL!

In a message dated 1/23/2008 11:25:03 P.M. Eastern Standard Time, writes:

but that the chances would go up with each child that we had after
I don’t think that this is accurate information. I’m no doctor and I don’t
mean to offend - but this is an autosomal (meaning not connected to the sex
of the child) dominant. (Meaning that if you get the half from your husband -
your kids will have it regardless of your non-CCD half.) I can’t think of
any reason that there would be ever more than a 50-50 chance unless you have
CCD yourself!!

Just my two cents!! - Stacy

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Sorry, my name is Marie. Looking back at a lot of things, I am not sure that I was given the right information about certain things. I guess if we had had the benefit of being in contact with my husband’s birth parents that would have helped a lot. It is very discoraging expecially since I work in the health care field. When I had my first son, I went one week over my due date, and ended up having a c-section. With this pregnancy, I worked at a family physican that also did OB. So I felt confident seeing the doctor that I saw for my regular visits and went to the OB/GYN for one visit to discuss the c-section that I was going to have this time. I was told that it was alright to have it done at 39 weeks, so we scheduled the section for that time. About 5 days before this I went to the perinatologist and there was some concern because he didn’t seem to be “breahting” regularly, that is he was moving the amniotic fluid through his lungs like he should have been. I was sent to L&D for the NST and then was sent home when it was reactive. (I was just there the day before and had the same thing done.) Anyway when he was born he had to be placed on a ventalaor and was in the NICCU for the first 10 days. Both the OB/GYN and my doctor (she assisted with the section) seemed surprised that he had breathing problems. It seems that this is not unusual for this condition, has anyone else had issues with this?

Trey was about 7 days overdue - he was in NICU for 5 days. Breathing to
start - and some sort or round of antibiotics that kept him there which I think
were totally unnecessary… but once started - had to continue. - Stacy

In a message dated 2/7/2008 6:50:37 P.M. Eastern Standard Time, writes:

It seems that this is not unusual for this condition, has anyone
else had
issues with this?

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