Suspected craniosynostosis

[Becca1818]

Ds is 4w 2days old. He was breech and delivered via c section. At 2 days old the consultant came round and mentioned the shape of his head.
We had our consultant appointment yesterday and got sent for an x Ray. Just got to wait now.
Feeling scared and worried.
Is anyone in the same position?

My friends dd had craniosyntosis, and had very successful surgery at GOSH when she was 18 months old. She's now a very lovely 8 year old, and the only sign of her surgery is the scar over her head if her hair is pulled back in a certain way

Thanks for coming back cmot. Good to hear she was all ok! How old was she when she was diagnosed?
Is she well now in terms of her development?

I think she was about 2 months old as she'd been seen by the paeds for other issues (she wasn't well when born), but you didnt really notice till she was a year.

Shes a bright little button - shes had issues not associated with the cranio, but nothing associated with it

Thanks for the info.

Hopefully find out one way or the other sooner rather than later.

My ds has a metopic ridge. Its mild and doesnt need surgery. I had the hospital check it out and they measured his head as i was worried. I joined an organisation called cranio kids and it helped me find out info about it.

www.craniokids.org/

Ds2 has metopic craniosynostosis. As with Green's son he didn't need surgery but it took an MRI, head xrays and a CT scan to establish this and it (along with a few other unrelated issues) made for a very stressful few months.

"Headlines" is a good charity with lots of information on its website about the different types of the condition, treatment centres and options etc.

Actually i think it was headlines that i joined.

Barbara, what age is your ds?
My ds is nearly 7. He never had those checks. Infact, i had to push for his appointment as noone thought anything about his ridge down his forhead. Its not that pronounced but the doctor just looked at him and took a tape measure! This was at the children's hospital. If it hadnt ben for me going to the doctors a few times, nothing would have been checked. He developed the ridge when he was about 2.

He also shows no signs of trigonocephaly when you look down at his head. Just a ridge on his forhead and no other symptoms.

My DS has/had (never quite sure of the correct tense!) Sagittal Craniosynostosis and was operated on at 13 months by the fab craniofacial team at John Radcliffe in Oxford.

It's great that if it is Cranio its been spotted so early as it is rarely picked up at birth (we were lucky that way too)
Headlines is great (and also has a very good facebook group) but is aimed primarily at those with syndromes involving a craniofacial element rather than single suture craniosynostosis.
I know it is scary bit do try not to worry too much. Feel free to PM any questions if you prefer and I'll do my best to answer what I can

Green garden he's 7 now but all the tests I described were done by 4 months. Ds2 was a bit unusual because it was thought that all the sutures in his skull had fused by 6 weeks (that would be a very serious diagnosis, usually associated with extreme disability). In the event, they were merely very narrow and only the metopic suture was closed. He avoided surgery because the rest fused quite (but not too) early, so avoiding all but a hint of trigonocephaly. His skull is very heavily ridged along all sutures (as is dh's and mil's) but you can't tell this under his hair.

Ds2's condition was only noted when when he was admitted to hospital for an unrelated matter at 6 weeks. And ive met quite a few mums of children who have metopic craniosynostosis but needed no surgery since.

Hi all, nice to hear other stories and they all sound positive!

I'm trying not to think about it at the moment until I hear from the hospital next week - I don't want to get my hopes up that alls ok just yet but I will touch base as soon as I've heard from them.

On a positive note though his head shape, I think, has greatly improved since birth.

Becca

Please be aware though that xrays can sometimes show a problem when there isn't one. If the xray shows a problem you'll be sent for a CT scan to confirm -this is the gold standard test.

On the other hand, if the xray says all clear then you can 100% trust this is true.

^^ This is something I wish I'd known 7years ago.

Thanks barbarian. Really appreciate the advice.

I have everything and more crossed that we get the all clear.

I wonder why they don't just do a ct scan in fhe first instance? Save for any false positives and any unnecessary worrying?

It will be about money wont it? Isnt everything :(

Sadly that's probably true green

Aside from the cost being the reason for not doing CT scans and doing X-rays instead surely the risk of high level exposure to radiation from a CT scan? It's much less risky to do an X-ray.

Children get a lot more radiation from a ct than from an x ray, so its important that other tests are done before going to ct. MRI isn't suitable as it doesn't show bone very well.

Yes I guess that makes sense. I am rather naive when it comes to the medical world. Still either way I am hopeful.

Yes CMOT is right, its because CT scans use higher levels of radiation -fine if necessary but better to avoid if possible. You sometimes need sedation to keep the child still for a CT scan as well - although w ds2 they just scheduled it for his nap time, let me feed him to sleep in a side room then took him straight in to do it. Babies are much easier than toddlers for this sort of thing.

I'm still hopeful it wont come to that.
Hopefully hear sooner rather than later this week.

Consultant called. She thinks there may be two fused sutures. He's being referred to the children's hospital.

Very upset.

Chin up sweetheart. The next thing that happens is that they'll establish whether or not there is actually a problem. Then you'll know for sure and can plan for the next step.

Nobody wants to be in this position, with people umming and ahhing about their perfect little baby. But if the sutures are fused then it's good you know know and it is treatable.

Please don't let this overshadow these next weeks with your baby. I let it totally consume the first few months of ds2's life and I regret that bitterly. Do fun stuff and create good memories that you can look back on along with the dark moments.

Can I ask, those affected did your lo's have any other features that were associated with coronal cranio? Other than a ridge on the left side coronal there isn't anything else I can see that indicates it.

Thanks barbarian. That's exactly how I feel. I feel like the first 5 weeks of his life have been nothing but tarnished and being in limbo doesn't help.

I may speak with the hv as feel I am on a slippery slope with how I am feeling (other stuff going on too)