hi to all

[joshuasmummy]

hello, im sort of new to this website. i used to post over a yr ago when my little boy josh was first diagnosed with sagittal cranio.
he had surgery in october 2007 at birmingham hospital. All went well and he is doing well. slight develpoment delays, but nothing major. his surgeons have said when we went for his checkup last july that his temples are very narrow. if this is a problem then they will operate again to widen them with putty. he also got quite a big hole (soft spot) on the right side of his head above his ear, they hope in time this will close. has anyone else been told this with a sagittal?
also my little boy has clinodactyly on both of his little fingers, surgeons dont think this is linked to cranio. we see another consultant in another hospital closer to us who keeps an eye on his development. He thinks we should have genetic testing done, incase there is an underlying syndrome. what do you all think to this, i didnt think a syndrome could be present with sagittal?
when i research the net about both conditions, the clinodactyly is mostly connected to a syndrome. really confused about what to think.
we have an appointment in jan with genesitist.
any info on any of this would be greatly appreciated
thanks

[Jenny]

Hi there.. i have clinodactyly as well. (didnt know there was a term for it until i just looked it up!) I was bicoronal and mine is syndrome related, although not positive which one, although were suspecting Sathre Chotzen. I also have syndilactyly of my fifth toes, along with the broadened flattened toes and thumbs. Man that makes me sounds like a genetic mishap, lol. ANYWAY, My daughter also is bicoronal, she was last seen at age 2, which she had some holes stll open, they have closed since. The docs told us to wait till age 5 to re-evaluate. She may also have some cosmetic work done with the putty paste in her temple area. It doesnt hurt to see the geneticist, the hardest part with that is having insurance cover it. If it does, i suggest going.. it could give you some answers for in the future, such as passing it on. Good luck.

[Holly]

Hi and welcome back to the site. If there are some holes left I would diffently wait awhile to see if they close on there own. My older sagittal son had surgery 3 years ago and his head is still changing. He actually had an indention (not sure if was an actually hole) that has filled in just with in the last 5 months. I'm not sure on the syndrome question. My kids do not have any syndromes.

[cheryl2]

Clara and I have clinodactyly too. In fact, the picture posted in the Wikipedia article about clindodactyly could be my hand, lol. http://en.wikipedia.org/wiki/Clinodactyly

Both Clara and I have Saethre-Chotzen. Clara had coronal, but I'm pretty sure I've read that people with SCS can have sagittal as well.

[craniomommynbaby]

Hi there! We are more coronal cases with a syndrome. The geneticist tested for Saethre-Chotzen, and that came back negative. The next guess is Crouzon's. Besides having multiple cases of cranio in the family, there are other things that pop up all over the place, including misshapen ears, short fingers, wide toes, etc. Just curious...what is it called when your pinkie toe is curved like that on both feet?