is ct necessary for diagnosis?

[infinity]

hi all
i am new to all this. my son just got evaluated yesterday. 2 concerns - he does not look at all like a lot of kids i have seen on the internet. to my eyes he has a "mild case". he has sagittal cranio. could someone tell me what a coronal means? bc my husband and i are second guessing the dr who says an mri is not necessary for diagnosis. but a few a you said your kids underwent the surgery just by physical exam as a basis for your decision. he is already 6 months old and has no developmental problems. we are challenging the thought of whether or not he needs the surgery, bc he really looks ok, just has a big head, but he is a big kid - at 6 months he's already 20 pounds. i am not one to disacklowledge any problems with my kids, dont get me wrong - so i am not afraid of accepting this, the problem is i dont know if he is severe enough to have to undergo the surgery. any advice, i would appreciate it. thanks!!

[cheryl2]

Hi, welcome to craniokids, sorry you have to deal with all this.

If you want, you can post a picture of your son. We of course are not doctors. But we love looking at pics. :-)

Sagittal and coronal are the names of the skull sutures. Your son has sagittal cranio (or the docs say he does) because one of his sagittal sutures closed prematurely. My daughter had coronal cranio because her right coronal suture closed prematurely. Other sutures are metopic and lambdoid.

We knew before the CT scan that something was wrong. By 6 months, it was definitely noticable that her head was misshapen. The docs could have made a diagnosis without it, but I'm glad we got a scan to confirm it. The important thing to know is that a lot of parents have posted that their children we're misdiagnosed with Xrays. If there is a question in your mind about the diagnosis, I'd ask for a 3D CT scan.

Take care, hope this helps.

[Mom2William]

Hi - my son also had sagittal and metopic (forehead ridge up between the eyes) closures. To look at him no one noticed his head was mis-shaped except for along the back of his skull. He had a big ridge or bump along the back.
However, he was 3 yrs. old at the time of the surgery due to misdiagnosis and his head became more mis-shaped as he got older which is why the ped. finally had an xray done. I think you need a 3D ct to confirm closures. The scan showed that Will had a lot of brain pressure due to lack of room altho. he showed no symptoms or any dev. delays (except speech). He had thinning places on his skull from the pressure and "pounding" of the brain. The PN said that he was surprised that he did not have headaches and the month before the surgery he was getting several headaches. I think he did not know how to let me know his head hurt and it was always a dull pain for him.

I feel like I am scaring you by giving you TMI and that is not what I want to do. You can always get a second opinion by another PN. I do think at CT scan can give the PN the tools for a correct Diagnosis and I would ask for one. I wish I had pushed our peds. for one sooner...
Anyway, we would love to see pics and answer any questions. I have to run and feed my crew- their bellies are growling along with their mouths! LOL

[Jennifer]

FIrst off- WELCOME! I'm glad you found us and I hope we can help. Is a CT necessary- no, reccommended- probably. My daughter was unofficially diagnosed by our ped- by looking at her and feeling along her skull. She sent us for x-rays, which showed the closure. We went to the NS who also said, yep, there's a coronal baby. She order a CT- but that was to make sure there weren't any 'suprises' during surgery (ie- something else fused?).....
If you are questioning anything, I would definantly request a CT scan (different from MRI I believe) to verify what is going on in there......

If you do get a chance to post pictures- for saggital babies I believe it shows the shape best from the top of the head......but we'd love to see his little face too!

[Rhonda O]

My son Zachary was diagnosised with sagittal without a CT scan. He had a CT scan the week before the surgery, but the surgery had already been scheduled for about a month at that point. I would love to see pictures of your little guy.

[mom2mykidos3]

My daugther Miriam was diagnosed without a CT scan. They just did one before surgery for the paper work, more or less. Our PS said that about 10% of CS cases have cranial pressure. I know that wouldn't take the chance of my child being in the 10%.
I am sorry you have to go through all of this. I wish you the best of luck.

[cassidiesmama]

My daughter Cassidie was born with right coronal and when they finally decided to help us after telling them a million times something was wrong and after going thru wrong diagnosis of plagio, the plastic surgeon took one look and said right coronal and sent us to CT to confirm. I was amazed at how it all looked when I got a print of it.

[Melissa]

My son Bryson was born with all sutures fused, so it was fairly obvious from the very beginning that "something was up". He was diagnosed with Pfeiffer Syndrome by a geneticist who visited us in the hospital, based on physical exam. He did have a CT performed when he was 8 days old, though, in preperation for his first skull operation. It's not mandatory for diagnosis, but could help in some cases. It should be mandatory for surgery, though, if it's not already...IMO...

If you want a visual explanation for some of the cranio issues, take a look at http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/craniofacial/cranio.html. It has diagrams of some of the sutures/closures.