Does anyone have experience with Saggital Craniosyntosis??

[becca81]

Hi, please can you help us. I'm not even sure I'm posting in the right place. I did post a while ago asking about a 2 yr old and his speaking / language development. I was very grateful for all the answers I received. DS is now saying a few more words, but not many. We don't get simple insrtuctions e.g when he wants to be picked up i would think at 2y+2 months he would say "mummy up"
Having been for his developmental check (where all he said was "car") they seemed to think nothing was to be concerned about.. however,I am now wondering if there could be a link in his delay with his speech and the fact he has Saggital Craniosyntosis. This was apparent at birth as he had quite a large ridge across his head. People asked if he'd been born with the aid of a ventouse. (he hadn't it was a normal delivery) Our health visitor tried to fob us off and tell us that his hair would grow over it!! Anyway after much persistance on our behalf we finally got to see a specialist at Gt. Ormond Street. He said he could operate to change the shape of DS's head, but it would be purely cosmetic. We said no. On his head it's the two plates, the saggital ones, running down the middle of his head have fused early. His head is now longer rather than rounder. To look at him you wouldn't know obviously there was anything wrong.
To get to my point, I am now wondering if this could be anything to do with his lack of speech? Does anyone elses child(ren) have this? Have they had any problems? I've looked on the internet and all I've found is American sites that are really pro cosmetic surgery to change the shape.
I'm sorry this is so long and I thank you for sticking with it to this point.
All answers much appreciated.
Cheers, Becca81.x

bump.. someone must know?

Ta.

I wish I could help. When ds2 was born it was suggested at the hospital that he might have craniosynostosis - he also had a ridge on his head.

After we came home he went to the GP every week to have his head circumference checked. Luckily it was growing fine. I would suggest that if your ds's head growth is OK then hopefully everything is OK. But if you are worried then definitely see your GP and ask for another referral to a paediatrician.

I am a mother of a 8 year old boy who has surgery @ 11 months old. He is now in 2nd grade and is currently 2 1/2 years behind his age group. The only thing he can do at this point in time is spell his name. He isnt completely potty trained and he doesnt do well in school at all. He is also currently getting phsyical,speech and occupational therapy through his school. I had him evalutated with someone through social security to be able to get these services along with medicaid. He is also adhd and takes addreall to keep him calm. His surgery was a 15 hour process.Its alot of work with him but he's progressing as best as he can. The most important thing is to patient with your child.

Hi Becca. I keep typing out posts to you and then deleting them because they seem crass or overly concerned.

My DS was born with a severe case of plagiocephaly without synostosis and was under the care of the Radcliffe at Oxford for the first 3 years of his life. He had annual multi-disclipiniary asmts where his speech and lanaguage delay was identified and he was referred to local services (we're in London, but chose the Radcliffe because it was easier transport wise - crazy I know).

He went on to get a diagnosis and lots of speech therapy locally and I'm really grateful for the care he received and the early identification of his needs.

Has your DS been seen by the team at GOSH lately? I know how you feel about surgery and I also know all about the US sites advocating bands and reconstruction - I was on them a lot a few years ago myself.

I hope I'm not intruding on your thread. I know my DS doesn't have the same DX as your DS but thought I'd post just because I've been where you are with the hospitals and the speech worries.

My advice would be to contact his consultant's secretary at GOSH to say that you're worried about his development and ask if he can have an MD appointment if he hasn't had one recently. Even if you don't won't surgery - and I can understand why - it would be good for you to make use of the hospitals facilities, assusming they're the same as Oxfords.

I'll look in tomorrow to see if you've replied.

Even if you don't want surgery...

Sorry, I should have been in bed hours ago

This may be a bit late, but there is a fantastic charity/support group called Headlines that deals with craniosynostosis.

www/headlines.org.uk
email - [email protected]
phone - 01454 850557

Gil Ruff from Headlines was very helpful to a friend of mine whose child had cranio.

Hi my daughter was born with sagittal CS. she is due to have surgery to correct this on 13.09.10.

if you want to chat please email me on [email protected]. I have found it very difficult to find a UK forum. Lots of US forums about but they do not operate the same as UK

Hi becca and JakH - my DS was born with this condition and he had surgery to correct it (almost exactly nine years to the date that JakH's daughter has been given). It was a difficult decision to make as it was 'only' for cosmetic reasons but it was succesful and he has not had any developmental problems; he had to have check ups at GOSH for the first five years but was then 'signed off'.

We were fortunate in that his condition was diagnosed immediately after birth (EMCS - we didn't know at the time but the shape of his head might have meant he could have got 'stuck' !!). It is an unusual condition and hard to recognise.

I agree with NoNickname's suggestion to get in touch with Headlines - they are very supportive.

JakH - would you like me to contact you direct with my experience?

Hi Ragwort

That sounds a lovely idea. My email is [email protected].
It would be lovely to know od your experience and have such a positive outcome. How did you cope at the time and what was the operation like and his recovery?

Hi JskH - just seen your reply, I am off out for the afternoon but will email you later today.