My son is 3 and around the age of 4 1/2 our pediatric plastic surgeon wants to surgically close his soft spot. Has anyone heard of this or has anyone had this done??
I have CCD and have friends from all over the world with CCD I am also moderator of the CCD yahoo support forum. This is my opinion as I am not a doctor. Did you know that living with a large soft spot isn't dangerous unless actually poked with a sharp object? Did you also know that if one falls with a large soft spot that it is less dangerous that someone with a closed head? Think brain swelling. With a closed cranium that brain cannot expand but with a soft spot the brain can. A lady on the yahoo forum's doctor told her that the likely hood that something would ever puncture the soft spot is extremely rare. One would have to be running with a pair of scissors and then to puncture the top of ones head again would be rare. There are hundreds of people with CCD that soft spot completely closed as they aged and other's whose soft spot has decreased in size and other's whose never close and yet they live long healthy lives. I am a daughter of a wonderful father who was the first to have CCD in my family and I also have a sister with CCD. I have 2 children with CCD and my sister who has CCD has 1 child with CCD for a total of 6 of us. Also in my experience with CCD (I am 49) often Doctor's are totally unexperienced how to handle those of us with CCD. One friend had a child born with CCD and the doctor was so freaked out about the large soft spot that he wanted to medically paralyze the child till his soft spot closed. UM yeah! Your son is 3? Can you imagine her fear? How silly. Other doctor's often pin things on CCD that aren't related to CCD just because they just don't know what it is. You need those of us who live with this to know that with CCD it isn't a big deal. The main problem with CCD is dental issues. Seriously think of being my friend and write to me at anitak1982@hotmail.com
Anita
Ok so I was looking for helpful information. I understand that a lot of doctors do not know much if any information on CCD. That is why I joined this forum. I am looking for information on doctors that do have experience with CCD. I know and understand that people with CCD can live normal lives. My husband grew up being told he could not do many things. He was told not to play any contact sports, he play on a semi pro football team. He has accomplished many things. He has lived a normal life. Yes, his soft spot closed when he was 15. However he has a slight deformation of his forehead, and this has caused to have some self esteem issues, being teased as a child. All I am asking is if anyone has heard of doctors doing this. My son where’s a helmet for protection, due to his soft spot. You have to be careful with a baby’s soft spot. Why? If there is no way one can be harmed by having a soft spot as a child or as an adult. Why do you have to be careful with the baby. Our doctor has had other CCD patients, he recomends having our sons soft spot closed. All I want to know is if any one else has heard of this.
Yes I have heard of it. I have a slight indentation in my forehead and this
isn’t the soft spot they usually close. I wear bangs to cover it up. I just
wonder is the pain worth it? For me I wouldn’t personally ever have wanted
this done. Didn’t want it for my children nor will I feel it is necessary
for any grandchildren. But one needs to choose for themselves. I have seen
children where they have had this surgery done. It can scar and the hair
doesn’t grow where the surgical stitches will be. Again this is your
decision not mine.
As for soft spots in babies and being careful. My children’s entire back of
their head was soft as well as the top of their head. Never did anything
different with them than I do with a child without CCD. I am careful with
small ones because they are very small. I was told that the membrane
covering the brain is very tough and that I couldn’t harm them just handling
them. You wouldn’t want to push on the soft spot but my hands just cradling
their heads would feel as if it were going to go through. Nothing ever
happened to them. They didn’t wear helmets either. Both are extremely bright
and gifted adults.
As a child I fell off the basement steps off the side of the open stair
case. I hit the cement floor with a bang that Mother said sounded like a gun
going off. I actually bounced. The hospital told them that it was a good
thing my skull wasn’t completely closed as I had a major concussion. Except
for puking my guts out and ending up staying in the hospital over night I
had no real problems nor any lasting issues with this fall.
If you join the yahoo CCD site you will find more people with opinions about
this than just mine. Some have had the surgery but most have not.
Anita
On Sat, Mar 22, 2008 at 10:33 PM, LogansMama <
cleidocranial-dysplasia-cpt8167@lists.careplace.com> wrote:
Hi Logans mom,
I accepted your “friend” request. Not much to tell in the teeth area right now. We are anxiously awaiting more to come in! I will stay in touch about our progress though… As for the closing of the soft spot topic, our son Luke has one that is very large. He has a large dip in his forehead because of it. We took him to the UNC school of dentistry in N. Carolina when he was 4 to see a cranial facial team. We chose UNC because it was a dental school that would be on the cutting edge of denistry, and this cranial facial team of 7 included 2 plastic surgeons who could answer alot of questions re: Luke soft spot and his other facial issues. His best advice for us was to leave it alone. He discussed the brain having room to swell should there be a head injury, the tissue being extremely thick, etc… pretty much what you’ve already been told. That’s a tough call to make and I really understand where you’re coming from with the self estem issues. I worry about teasing, etc…but it’s going to happen to our children no matter what b/c that’s what kids do. I would strongly advise seeing a cranial facial team that can discuss all your options and any issues that could occur that you haven’t even thought about. I’m not sure about the web address, but if you google " F.A.C.E.S. " you should find this site. They will send you a packet w/ a listing of where these assembled teams are. You can also discuss Logans’ dental situation. We were able to see an oral surgeon and an orthodontist as well.
Shyra
P.S. LOGAN IS ADORABLE!!!
yes, i have heard of it. The doctors at childrens hospital columbus ohio USE
to say protect the head, wear a helmet, have it closed yada yada but over
the past 40 yrs they have changed in that when my son was born (his father
was ccd also) they said they had found that unless the soft spot was
extreme- meaning it extended not just the top of the head but into the back
and down both sides- that there really was no reason to protect or close the
area as there is a very tough protective layer over the brain on top. they
have also stopped pushing people to protect the softspot of newborns at all
costs also. My son had (and at 18 still has some) a large almost extreme
soft spot. it has actually been rediagnosed as a complete midline
cleft…meaning his head is two parts with nothing in the middle from base of
skull to bottom of chin. It was said at first that we would be needing to
protect his head at all costs, then at his 4 month checkup they decided that
the study results proved that wasnt needed. However they said that he may
want to be a bit careful in full contact sports, but no more than anyone
else.
Now, it is completely up to the doctors and the parents as to if they do
something that drastic…but if you want info on doctors that knows a lot
about CCD and a lot about closing the head and such…contact Dr. Ruberg’s
office at Nationwide Childrens Hospital in Columbus ohio at 614-722-2000.
Ask for the cranial facial clinic. Yes there is an entire clinic for ccd
patients here and they have a specialist from every specialty there is. When
we go in my son see’s a neurologist (Dr. Elkin) a plastic surgeon (Dr.
Ruberg) an orthodontist (Dr. Lude) an ENT (Dr. Kang) a speech and hearing
tech (Changes often) a psycologist (Dr. Evans) an orthopedist (changes) and
a genetists (Dr. Atkin) all in one day, most at the same exact time, they
all evaluate him, discuuss things with us, then when they are done they all
meet and discuss him so that everyone is on the same page and that someone
doesnt recommend something thats become inadequated or unheard of…and so
they dont each tell us something different and us get either upset or
confused. In 18 yrs with them my sons care has been phenominal! He can do
anything he wants, has played all types of sports, has riden in dragsters,
is getting ready to go to college for high performance auto mechanics…so
he can build racecars. It hasnt held him back…well, his dysgraphia and
dyscalcula has…but I dont think his brain tumor (since birth) is CCD
related.
Anyway, I wish you luck
Kim
----- Original Message -----
From: “LogansMama” cleidocranial-dysplasia-cpt8167@lists.careplace.com
To: kawalker@columbus.rr.com
Sent: Saturday, March 22, 2008 10:33 PM
Subject: Re: [cleidocranial-dysplasia] Surgical Closer of the Soft Spot