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]

:welcome 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! :hugg

[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! :hugg

[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.

[craniomommynbaby]

For the first CT, they gave me an apron and allowed me to hold a pacifier in his mouth as they did the scan. For the second CT, he was older and much more active. They tried an oral drug that was supposed to relax him, but that ended up agitating him. They ended up with the IV sedation. Once he was asleep, it went quickly. I just had to make sure he did not sleep in the car with his head drooped on the way home. Having the IV sedation helped ease my mind at surgery time about the anesthesia.

[snickers9246]

For our Doodles, she was 3 months at the time, but they had to sedate her. They gave us an oral medicine that made her pass out in my arms in a couple of minutes. I found it pretty traumatic and cired myself, but she was fine. We just had to wait several hours for her to wake up after. They did both the CT and X-Rays that day. Definately push for the CT, even if your facility doesn't have the 3D one (Ours didn't) a regular CT can diagnose the cranio.

Good luck and thanks for keeping us posted.

[ky-sheltowee]

Our first appt with the neurosurgeon is tomorrow (Thurs). I printed out the list of questions to ask the NS (what a great resource!) Nervous but I will be happy to find out if he really has cranio or not. *Not* looking forward to the prospect of him having to go under gen aesth for the CAT scan, but it is the most likely scenario. Wish us luck!

- Dania and Daniel

[Addy]

Good luck tomorrow! I thought our son would definitely need sedation, but we had an awesome technician and it went fast without. She wrapped him in a warm blanket and I held a toy above him and sang to him(22 mos old). Normally he freaks even if a doctor touches him. He did cry a bit, but it was over quite quickly and happily the results showed no cranio. I'm praying your son doesn't have it as well. Best luck. Hugs

[Jennifer]

Good luck tomorrow! Our thoughts are with you!

[ky-sheltowee]

Well, it was all over very fast! We walked into the exam room, handed the disk with xrays to the nurse, waited about 5 minutes (or less). The NS came in, looked at Daniel's head, looked over DH, and asked if his Mom thought that Daniel looked like DH when he was little. He couldn't answer that as DH's Mom passed some years ago, but the upshot was that that the sutures on the xrays looked fine, and Daniel's head shape looks like his Daddy's. LOL! I did push a little more, pointing out that Daniel's head size is small and not growing very much, but he measured DH's head (50%-ile) and my head (less than 50%-ile) and said that Daniel will probably have a small head. He asked if there had been any developmental delays, and I indicated that there had not been. He said that from the xrays and looking at his head, he really didn't see any indications. SOOO, it looks like we are clear. Really, after all my worry and research, the whole thing was very anti-climatic, but that beats the alternative!

I wanted to say thank you so much to everyone here. This is such a supportive group and an excellent resource. Thank you and I hope that everyone has an excellent Easter!

- Dania and Daniel

[Ethansmommy]

Ethan is five months old and we just had our scan done on Tuesday. They told me that I would have to have him put to sleep and he had to fast. The fasting was the worst part! They did end up letting me nurse him and they wrapped him really tight and did the scan while he was still awake. I think the only reason he sat still was because he was overdue for a nap and finally got a full belly!

[mayashekhina]

I think it must be a more regular practice than they let on we fasted beth and when we got in they allowed us to feed her (natures own anesthetic) she fell asleep straight away and stayed that way while I carried her from one hospital to another where the machine was set up, and back again we were out before we were even due to begin. That was a great day!