Narrowing but not closed

[ky-sheltowee]

Greetings! My name is Dania and I found this group through the Birth Defects board on BabyCenter. Kari - I found your thread where Denise referred you to here. Anyway, my son, Daniel, is 3 1/2 months old and I noticed a couple of weeks ago that his head kinda veered off to the left. Made an appt with his ped and she ordered a skull xray to see if one of the sutures had closed. I did a bunch of reading on the internet while waiting, and it looks like he may have sagittal cranio. Got the results yesterday, and she said that one of the sutures had narrowed, but not closed. She wants to see him again now that she has seen the xrays. We go on Monday. Do any of you have any experience with narrowing but not closed sutures? Am I looking at them going ahead with surgery or watchful waiting? Should I push one way or another? Are there other options if we have caught it early? Other possibilities that may mimic craniosynostosis? Thanks for any help that anyone could provide. This seems like a really supportive group!

[Mom2William]

Dania
I am glad your ped. looked into your son's head shape. Mine just dismissed my concerns. It sounds like you have a good ped.
To answer your question, I have not heard about sutures just narrowing without closure. My son had both metopic (forehead) and sagittal (along the top of the head front to back) BUT he had a soft spot the normal time and I think that is the reason my peds. just dismissed my concerns. He actually had a partial closure and once it closed all the way, his head became more "pointy" on the top and he had the bossing in the back of his head.
I think I would ask to the ped. if she needs to refer you to a Ped. neurosurgeon just to make sure that everything is o.k. the PN may want to have a 3D CT scan that shows both the brain within the skull and the skull shape/sutures.
I do not know much about plagio (positional) head shape but it may be something along that line and I think most of the children can wear a band or helmet that reshapes the skull.
Good luck. I know the waiting part is hardest when you want a answer now! I would write down all your questions to ask the doc. on Monday, so you will not forget. I know once I get in the office I can get sidetracked and forget a question or two. Please let us know what the doc. says and we will be glad to help answer any other questions.

[Connor's Dad]

CT Scan only way to know indefinately.

According to radiologist after x-ray all Connor's sutures had closed, however after extreme panic and CT it was discovered only sagittal.

[Katie]

Welcome Dania, I'm glad you found us! I've heard of partial fusion, but I've not heard of narrowing. Can you push your ped for a CT scan? They give a much better view of the skull and can sometimes pick up things an X-ray can't (Dillon's X-ray picked up one of three fusions). I'm very glad your pedi didn't give you the typical "wait and see, it's probably just his head shape" reply that so many others have heard before! Let us know how your next appointment goes, and agian, welcome!

[Jennifer]

Welcome! Glad you found us. I think everybody else has said it all-I also don't have any info on narrowing vs closing. Please keep us posted. I would probably push to see a neurosurgeon w/ handles cranio- just to make sure. Good luck!

[mom2mykidos3]

I would also try and get to a specialist. They seem to know a lot more about craniosynostosis, like either a neurosurgeon or a craniofacial plastic surgeon. I was amazed at the knowledge of ours.
We also had a CT scan. I think they are so much better than an x-ray. You are able to see the 3D picture. You might want to push for one.
Other than that welcome and I hope you find the answers you are looking for.

[ky-sheltowee]

Just wanted to post a follow-up. Had an appt with his ped today, and she showed us the report from the skull x-ray. Same as we heard over the phone. Narrowing, but not closed (and it is the sagittal suture). I guess that I must have a really good ped, as she went ahead and referred us to a pediatric neurosurgeon without us having to ask her to. We are waiting to hear when the appt will be. It will be with Dr. Thomas Pittman, out of the UK (Univ of KY) Medical Center. Has anyone heard of him?

I also wanted to say thanks to all that responded. It really helped ease my mind knowing that even if we do have to have surgery, that the outcomes are so good and also to have an idea of what is coming next.

Which reminds me - if they do a CT scan on an infant - how do they get them to hold still? Thanks!!

[Jennifer]

Which reminds me - if they do a CT scan on an infant - how do they get them to hold still? Thanks!!

Hopefully, because he is so young, you can time it so he is sleeping. That's what we were able to do when Emily had her's at 3 months. I wrapped her in a blankie and nursed her while waiting and then carefully walked her to the room. She stayed asleep for the whole thing. If that doesn't work, they may have to put him to sleep- they did that w/ Emily for her 2nd scan (she was about 18 months)- they just used a gas mask type thing and she was awake w/in 10 minutes. When you schedule the CT appointment, they should tell you what they expect- but at his age, I would definantly think you could do it w/ him sleeping.....just hold off any sleeping up until that time!


Way to go to your ped!!!!

[MikenAustinsMommy]

FYI, Austin had 1 skull xray and 2 CT scans his first week of life (he had a very traumatic time coming down the birth canal). None of those caught his very obvious Right Coronal suture being closed. The only thing that accurately diagnosed it was a 3D CT ordered by the PS and NS because our Pedi referred us to them because he knew something wasn't right.

[mom2mykidos3]

With Miriam, to do the CT scan, they put the IV to do the sadation medicine and it made her so mad and sad that she just cried herself to sleep. So, we didn't need to have the medicine. It was very nice.
I hope you push for the 3D scan. They are a wonderful piece of medical technology.