mental delay's

[Alakai's mom]

My son has multiple suters closing and the thought of him having a syndrome is terrifing. Does anyone know which syndromes affect intelligence? Is multiple suture always a syndrome? I keep hearing different things.

[mommysbudbud]

Oh he is so young, why would you be concerned about intelligence..? :(
Yes multiple sutures is always a syndrome, if someone can prove otherwise, I would love to see the proof. Just because a child has a label 'syndrome' doesn't mean they are lacking in the intelligence department. I know a teenager with Pfeiffer Syndrome-Cloverleaf and her mom told me that everyone assumes that her daughter is slow or retarded when in fact she is extremely smart.
My son was diagnosed with sagittal synostosis at 2 weeks...single suture and we were told at 7 weeks that he has a craniofacial syndrome. By 6 months old, he had multiple synostosis. My son has been through genetic testing 4 times and all times it came back negative for a syndrome. The can be hard to detect and most diagnoses are done by appearance. Finding that tiny gene mutation can be impossible in some cases.
It will all be ok, trust me. Let me know if I can be of any help.

[craniomommynbaby]

There is a study published on the web which includes the sutures affected and the IQ scores of the children in the sample. I do not know where it is offhand, but I will post it if I find it. According to the results, some children did have lower scores, but there was not a case where every child had a low score. There did seem to be a trend according to what suture was fused and then at what time the correction (if any) was done. I do not recall if it even addressed syndromes. Again, if I find time soon, I will look again.
I can understand your concern. When my mother found out I had cranio, the doctors told her that I had already experienced irreversible brain damage. I was only 2 months old, and she was told that I had to have the surgery right away or else experience damage that could lead to a vegetative state. Back then, the doctors did not know that the brain is pliable and bounces back. My mother was greatly relieved when I reached kindergarten and my teacher told her that nothing was wrong with my brain. In fact, I was consistently at the top of my class. I graduated as valedictorian of my high school, and then I graduated summa cum laude with a B.S. in Mathematics. I now have an M.S. in Mathematics and teach at a local college. I did inherit a syndrome of some sort, and so did my son. (We have many cases of cranio in my family, and other features show up on different people.) My son is showing great promise as well. He had quite a few setbacks and still does not have the greatest speech skills, but he shows a remarkable ability to solve problems.
People tend to look at facial characteristics and make assumptions about the person's mental abilities. After all, Hollywood only confirms this by making characters with crooked faces or crazy eyes into the dumb or bad guys. It has to be true since it is on TV, right?
I am sending hugs to you and the advice to not freak out if your child is diagnosed with a syndrome. Yes, your child can pass it on, but the medical field has advanced so much in the past 31 years. Surgeries, therapies, and other treatments have come a long way to helping these children look normal and lead good lives. Who knows what will exist once our grandchildren come along.

[mommysbudbud]

Cindy,
I would LOVE to see that article, if you happen to find it. I am dealing with some issues with my son's school and what the educational environment that we all feel he needs to be in until he goes to Kindergarten. So any ammunition I have, the better.
Thanks, Dawn

[craniomommynbaby]

Here is the link.

http://jpepsy.oxfordjournals.org/cgi/content/full/29/8/651/T1

[Jenny]

i did see a while back when i did research on pfeiffers, that it also depends on with strain or gene mutation.. from what i read, is that there are two versions of pfeiffers, one that can be mentally debilitating, ad one that isnt.. i dont know much about genes, but it had something to do wiht the same chromosome, but different number? luckily, i've got the non dibilitating one.. but, like others have said, most is based upon speculation, and a lot of times, it doesnt show up on genetic tests.

[Jenny]

everyone should check this one out:
http://www.emedicine.com/plastic/topic534.htm
it is sooo informative... talks about all the different scenerios of cranio, and surgical procedures, and genes...even shows pics, ct scans, mri's.. wow!

[Jenny]

omg!!! my daughter's cranio surgeon was listed on that link that cindy posted!

[mommysbudbud]

I know of about 30 families who have a child with Pfeiffers, almost everyone said that in the early years of school...their child had some sort of learning delay.
I know a family that lives here whos daughter was born with Pfeiffer Cloverleaf, the most severe form of Pfeiffers and she is an honor student.
I don't know of anyone with Pfeiffers who is mental retarded. Maybe some that are borderlined though

[momtokendall]

Most of the craniofacial syndromes report that intellect is usually normal, but that learning disabilities are more common. Apert's and one strain of Pfeiffer's do have a higher chance of mental retardation. My daughter has Muenke Syndrome and is very bright.