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craniosynostosis

(7 Posts)
Amanda100188 Thu 16-May-19 11:50:38

Hello, my 13 week old has a elongated shaped head ( have pics but don’t know if I can put on here as no option) I’ve seen a few health visitors and my gp but they are not concerned as my lb openings in his skull are open and not closed. I’ve looked online about craniosynostosis and the head shapes look exactly the same as my little boys. His skull come out at the front and is very long on top looking down and the sides of skull sink in. The only difference in my little boy to the ones online and the information on the condition is my boys openings ( soft spots) are all open ( apparently ) and craniosynostosis means one or all are closed. Anyone else had same experience. I’m just not convinced what they are all saying. Better coming from a mums point of view who’s been there.
Thanks and sorry for all rambling

OP’s posts: |
surreygirl1987 Fri 17-May-19 08:23:03

I'm no expert but had similar concerns tatsome point. Turned out to be nothing (i hope!). We had an ultrasound altjoigh the GP waa very reluxtant and clewrly thought I was a paranoid anxious first time mum sad we think his plates were overlapping as he had a really prominent ridge.

What you describe COULD be saggital. Or it COULD be completely nothing. There's a brilliant Facebook group with loads of really expert mums and you can post a pic and get their opinion. Just search cranio onto Facebook and you will find it smile good luck!

Onebrokentoe Fri 17-May-19 08:42:39

My now 9 year old ds had saggital and ended up having two surgeries. I’m not in UK so can’t advise who to see, but in my experience the earlier the surgery the better the outcome. I’m not sure how your system works, but is it possible to be referred to one of the craniofacial centres at the major UK hospitals?

If you can work out how to post a photo looking down on the top of his head I could take a look.

Onebrokentoe Fri 17-May-19 08:44:40

Also, my ds soft spot was open but smaller than usual.

Amanda100188 Fri 17-May-19 15:01:16

Thank you so much. You know when you’re just not satisfied. I will look at fb now and I’m making another gp appointment. X

OP’s posts: |
Amanda100188 Fri 17-May-19 15:02:42

I can’t seem to sent pics. If you have an email I could but not sure how you would private message it x

OP’s posts: |
Onebrokentoe Fri 17-May-19 21:52:14

I’ve private messaged you my email address, go to ‘my mumsnet’ up the top of the page to find your inbox.

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