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Behaviour/development

Talk to others about child development and behaviour stages here. You can find more information on our development calendar.

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Original poster

10 week old with closed fontanelle

23 replies

PrivetDancer · 07/02/2011 17:06

Hi,
Anyone got any experience of this? HV has been round today to discuss DDs slow weight gain and at the same time noticed that she doesn't really have a soft spot anymore, just a bit of a dimple. I had noticed but didn't realise this was a bad thing! Have now googled and of course now very worried..

Got doc appt for morning (as advised by HV) but I expect this will just result in a referral and not really tell me anything straight away.

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Jaybird37 · 07/02/2011 21:18

Hi Privet

Sorry to hear you are so scared. Try not to panic as it will probably be fine. I would expect your GP to send you DD for an xray which will give much more information.

Let us know how it goes. Thinking of you.

Original poster

PrivetDancer · 08/02/2011 05:14

Thanks jaybird. Feeling a bit better now, even if it's the worst case then it sounds as though it can be quite successfully treated (although the operation would be terrifying). Hopefully will turn out to not be that.

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milliem · 08/02/2011 20:09

Hi, my DS had a very small soft spot (the one on the top of his head) at birth. An x-ray when he was a couple of days old confirmed that his metopic suture had fused early. It mean't that his head began to grow into a narrow shape at the front. He is now 18 months old and has just had surgery to correct the condition.

I'm sure everything will be fine, but if it does turn out to be something like craniosynostosis it can be treated.

Please let us know how you get on. Thinking of you.

CilantroLarry · 08/02/2011 20:13

A friend's little girl is 12 months down the line from her fontanelle closing early. She had had 2 operations and while it was a symptom of another condition entirely that is ongoing, she is happy and well.

You must be very worried. I can understand. I would imagine you will be referred immediately. There are lots of things they can do. Stay away from google.

Original poster

PrivetDancer · 08/02/2011 22:45

Thanks very much for your stories.

milliem v pleased to hear your Ds is through his op, I hope he recovered quickly and the end results are good. I saw some impressive before and after shots online.
cilantro what is your friend's little girl's condition, if you don't mind me asking? I did ask the doc if it could be a symptom of something else and she said no (had already seen it could be)

So we saw the doctor today, she didn't seem overly concerned, DDs head has grown the right amount since the 6 week check, which is a good sign. She said she had seen a few children referred for the same thing in her time and none of them had actually turned out to have cranio syntosis. We were referred for an X-ray, so I left with a form and just had to ring the hospital for an appointment. Rang them and they said they wouldn't do a skull X-ray on a 10 week old and an ultrasound might be better, so now I have to forward the referral to them and a consultant will decide the best way to deal with it.
So I guess it will be a couple of weeks before we know when next step will be.

Thanks again!

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NoodlesMam · 10/02/2011 00:36

My DD2's fontanelle's were closed by 6wks and she had a dip the size of of a 10p where the top one should've been. Hospital did xray I think around 10wks which showed that the bones were closed but not fused together, therefore still allowing brain growth. My DD2 has a smaller than average head anyway but has created her own curve and has continued to grow and develop normally. Googling scared the hell out of me. All tests came back clear but I still worried right up to her 2nd birthday when she was discharged from monitoring. We were referred to Birmingham Childrens Hospital to be checked for craniosynostosis and I have to say they were brilliant. Try not to worry, although I know that's easier said than done!

Original poster

PrivetDancer · 10/02/2011 17:29

Thanks noodles, it's good to know that it can just not be a problem sometimes.

I have now noticed she has a ridge along the top of her head and now convinced myself that her sagittal suture is fused
Have spent the last hour reading about the surgery needed as if its a definite. Doctors must really hate google, I'm going to be a nightmare patient's mother!

Really hope I hear tomorrow about when scan will be, will chase them on Monday if I haven't heard anything.

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milliem · 11/02/2011 09:25

Hi There, Don't worry, I'm not an expert, but I think a ridge on its own doesn't necessarily mean craniosynostosis. The sign of craniosynostosis is an abnormally shaped head. Remember cranio is very rare.

I think the best thing to do is try not to worry and be careful what you look at on the internet, I looked on the internet and to be honest it did really help me as I felt I was armed with information.

My DS sailed through his surgery and was up and about on his feet after a couple of days and we were back home within the week. If it does turn out to be cranio it can be sorted.

Den26 · 11/02/2011 23:07

Hey there, just popping in as my son was diagnosed with sagittal cranio at 7 weeks. He had a very small fontanelle at front and nothing at back, his head was also obviously mishaped - pointing out at back and forehead sticking out. We were seen by a consultant who confirmed it through observation and feeling his head, we then had ultrasound to check brain development which was fine.

We are going for surgery at the end of March when he will be 10 months old.

Its very scarey not knowing and i was/am a google addict which probably did more harm than good but also helped me understand better as my HV/GP etc didn't really know much about it.

I do know that more often than not the bones haven't fused so fingers crossed this is true for your case, good luck with the hospital appointment and try not to worry (i know its easy to say), if it helps please message me :)

Original poster

PrivetDancer · 13/02/2011 10:20

Thank you Den, do come back and let us know how the op goes, do you have a date for it? I expect you want it over and done with now. Interesting that they don't operate straight away, is that because his brain is not being affected? I guess the older / bigger the better in terms of having an operation.

I am calm again now, there is no point constantly worrying, and she is a happy baby, so not being affected if it is anything so I guess we will wait and see. Must stop fingering other babies heads for ridges :o

Milliem, thanks again, very reassuring. I agree, I would rather scare myself a little but know what we could be dealing with and have sensible (if slightly neurotic) questions ready. Expect the worst and hope for a nice surprise is my general motto!

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Den26 · 13/02/2011 15:53

Hey privet, surgery is on 25th march, so not too far away. Ur right def can't wait for it all to be over. I think they generally wait until they are bigger and stronger, but there are also different procedures too. I really hope ur lo doesn't have cranio but if so there are fantastic specialist teams out there and its treatable :-) good luck and i'll be watching out for the outcome of ur appointment

Ragwort · 13/02/2011 16:00

Hi Privet - my DS was born with a cranio condition (cranio synostosis) and had the op. at 6 months - absolutely no problems. You will need to be fairly assertive at the consultation as it is quite a rare condition and is sometimes missed - we were lucky in that it was discovered immediately post-birth before my DS was discharged from hospital.

There is a fantastic support organisation called 'Headlines' who are very helpful.

Den26 - good luck with your DS's operation.

Feel free to contact me privately if you wish for any more info.

SpawnChorus · 13/02/2011 17:04

Privet - my health visitor mentioned that my DD had a very small fontanelle when she was a couple of months old, but decided that there was no need to refer her at that stage. I of course googled it and spent the next 6 months or so examining DD's and other babies head ridges and worrying about craniosynostosis!

As it turned out she was absolutely fine and has a perfectly average sized/shaped noggin . Hope you end up with the same outcome :)

Original poster

PrivetDancer · 15/02/2011 16:48

Thanks ragwort and spawnchorus for more encouraging stories from both sides.

Very best wishes for your DS, Den

DD2 is having an X-ray in the morning, I doubt we'll actually be told anything tomorrow though, think we'll have to wait for report to go back to the GP.

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Lulumaam · 15/02/2011 16:51

I have a good friend whose DC had metopic craniosynistosis, diagnosed a few weeks after birth, DC had surgery around 12 mths and made a full and excellent recovery...

BarbarianMum · 15/02/2011 18:47

Glad you are having it checked out. Ds2 has metopic craniosynostosis, diagnosed at 6weeks (bollocks to no X rays at 10 weeks old, he had an MRI and then a CAT scan). He didn't need surgery in the end and has a rather ridged and slightly malformed skull (but you can't see that now he has hair - his face is fine).

The journey is very slightly scary but you are not alone and it is treatable if severe.

Den26 · 16/02/2011 09:36

Good luck with x ray today :-)

Original poster

PrivetDancer · 16/02/2011 22:58

Cheers - it went really well! Well she screamed when I held her head still with giant foam pieces, but soon perked up once it was done :)

They did 3 X-rays from different angles, then said "we'll just check the images are clear" so of course I hot-footed it over and peered over their shoulders and had a good look at them. I could see gaps in the skull where I would expect them, but obviously I don't have a clue really. I asked how it looked and they said "oh we can't tell you anything, we're just checking the images, the paed radiographer will have to study them", which is what I was expecting, but then the senior guy asked why they'd been done, and said that unofficially they looked ok to him.

I will find out for sure by next Wednesday hopefully, but feeling really quite optimistic at the moment! Didn't realise how worried I'd been until I realised how relieved I was.

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Den26 · 21/02/2011 12:39

Glad it went well and you feel positive about it, hope you hear for definate soon :)

Original poster

PrivetDancer · 24/03/2011 17:19

Just realised i never updated! Doctor was on holiday when report came back so I just got health visitor to look it up so it was never quite official, but 'no signs of fusion apparently'. Big relief :)

Anyway i just came on to say best of luck for tomorrow Den26! Will be thinking of you and your DS

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NappyShedSal · 25/03/2011 08:29

Good Luck for today Den26. Will be thinking of you and your LO.

Den26 · 10/04/2011 00:07

Hey, thanks PrivetDancer (so glad there is no fusion - yeah!!) and Nappyshedsal - surgery went amazingly and my boy now has a lovely rounded head :) Its now been 2 weeks and if it weren't for the scar you would never know he had been through all of that! I never want to go through something like that again but i can't believe how well my brave little boy dealt with it all and kept smiling :)

Thanks again for thinking of us

Original poster

PrivetDancer · 11/04/2011 03:53

Fantastic news! So glad it went so well!

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