Come talk to me about Craniosynostosis

[strawberrypenguin]

Just had it confirmed that DS has craniosynostosis, he's been referred to the Oxford neurosurgical team.
Anyone had any experiences either with the hospital or the condition? What should we expect? (will be seeing ds's consultant in a couple of weeks so can ask questions then but interested in others experiences with this) X posted in chat.

My friends dd had this, and a very succesfull operation at GOSH when she was 18 months old.

There was a lovely series about the Oxford craniofacial unit on TV last year - they seemed really lovely

Thanks CMOT nice to hear of a positive outcome :)

Hello strawberrypenguin

Ds2 was referred to the neurosurgery team at Sheffield with a provisional diagnosis of bicoronal craniosynostosis at 6 weeks. This proved to be incorrect and following a CT scan the correct diagnosis of metopic craniosynostosis was made.

We looked into the possibility of getting him referred to one of the specialist craniofacial centres but fortunately (???) his other sutures closed at the early end of normal the deformation to his skull was pretty minimal and he didn't in the end need surgery (though he has a very ridged skull under his hair).

What diagnosis has your lo got (and how old is he)? If he has not had a CT scan I imagine that they will arrange for this to be done as it is the gold standard in diagnosis (X-ray can give false positives, as happened to us). If you have had the CT scan then I'm guessing they'll discuss treatment options with you (treatment always involves surgery, so be prepared for that, but it is not always necessary).

I was very stressed about the idea of cranial surgery for my lo but was very reassured by what I heard about these centres. The Oxford Radcliffe has an excellent reputation- my friend's BiL has been operated on there several times, although for a totally different condition. They speak very highly of the hospital/staff.

Hi BarbarianMum (great name btw)
Pleased to hear that your DS is OK and didn't have to go through surgery.
DS is 13 weeks, he's had a CT scan and we've had a letter from the consultant in charge of his overall care at our hospital confirming some fused plates and that a referall has been made to Radcliffe but that's all, no info on which but I suspect it's Scaphocphaly as he has a ridge down the back of his head. We have an appointment with his consultant in a couple of weeks so will probably find out a bit more then but won't know the plan of action ( or not) until we've been to Oxford.
The idea of surgery is scary but if it's necessary then it's necessary , glad that Radcliffe has a good rep I guessed they must have a good team as there really aren't many places in the UK that do craniofacial surgery like this.

I knew about the 4 centres but as Oxford is closest to us as long as we are happy when we see the team there we will stick with them.
Didn't know about the website though, will check it out, thank you

Hi Strawberry,

MY LO is 12 weeks and has been diagnosed with positional plagio and mild sagittal synostosis. I've joined the american site ww.craniokids.org which is excellent for support, information and for satisfying my thirst for before and after pics. We've got our CT scan at GOSH in a couple of weeks and I've made contact with someone who has shared their encouraging experience of the same doctor/condition with me.

I tried to find the documentary that was on the bbc last year but couldn't get hold of it. Apparently it's quite graphic so maybe that's a good thing..

Good luck with your treatment plan

Hi smiling
I'll check out the site thanks. Although I wouldn't wish this on anyone it's nice to know there are other people who understand. Hope you CT goes well (my DS didn't mind his but we did have to wait around a while for him to get sleepy so they got a good scan)

Yes, my DS was born with this condition and was successfully operated on at GOSH at 6 months - it is obviously very scary but the consultants etc were fantastic. He had check ups for the next five years and has been totally fine ever since (now discharged). Headlines org. is very, very helpful, look at their website and phone them for a chat if you want.

PM if you would like to.

Ragwort Thank you, I may PM you once we know of he's going to need an op, if that's OK (I'm working on the assumption that he is, but hoping its mild enough that he might not) Glad you DS is fine it's always reassuring to hear of good outcomes :)

Hi! My second DD was referred to JR Oxford to get checked out as she had a very strong ridge down her forehead and a very odd shaped head in general. I was concerned it might be metatopic cranio. She was born with torticollis and also positional plagio it turns out ( hence the odd shape to her head ). We saw the specialist nurse there first who was brilliant, assured me that her xray was fine but did I want the specialist to give her a quick look over to which we obviously said yes, even though by that point I was sure she was ok. Anyway, Mr Johnson saw her and agreed she was fine. The ridge she had, he explained, was more of a fleshy ridge rather than bony. They were both utterly lovely and made us feel as though we'd done the right thing getting her checked. I am sure you will find them to be very supportive and thorough when you go and see them.
I too, by the time our appointment had come through, had been in touch with Headlines and had joined craniokids. I found both to be reassuring and helpful, especially in the lead up to the appointment.
I wish you and your DS all the best x

Thanks bobkate nice to hear of a positive experience at JR, heard good things about them in general but ont know anyone who has experience of that department.

Hi, My DD was born with Metopic Craniosynostosis. I thought from the moment she was born she looked 'odd' her head was very swollen and there was a slight ridge down her forehead. The ped Dr who released us from hospital just thought it was the stress of moving through the birth canal but although the swelling went down the ridge stayed. Fortunately the GP who did her 6 week check was a bit more on the ball and referred us to the JR. We first saw them at 4 months and that was the first time anyone mentioned craniosynostosis and operations, we were quite shocked as by then the shape of her head wasn't that bad or noticeable, but she did have quite a lot of hair. We had a CT scan done at 8months and saw the consultant again two weeks later. They confirmed the need for an operation for several reasons. The team at the JR fimly believe that the mis-shape of the head can cause the brain to develop in the wrong way, thus causing development issues later in life. The surgeon told us that if thought the only benefits were cosmetic he wouldn't be doing this sort of work, he does it because he strongly believes he is giving the children the best of starts, he obviously can't take away any risks of natural deveolpmental issues but he can make sure nothing happens as a result of their head shape. DD had surgery at 15months, it was possibly the hardest longest day of my life, I couldn't sign the consent form DH had to do it. The fear for me was that we were putting a healthy charming little girl through a serious operation. When we first saw her after the op I cried buckets, it's a scary scary sight, tubes and wires everywhere. For the next two/three days she pretty much slept and wanted to be cuddled, can't blame her she was doped up and her eyes had swollen shut. on day four when she managed to get her eyes open it was like someone flicked a switch and our daughter came back. we were out of hospital on day 5 and three months on she's just been given a glowing check up at the JR, no-one who doesn't know would ever guess. The team at the JR are fantastic especially Sue and Kate the Cranio nurses, they have always been on the other end of the phone if ever we've had questions or wobbles. It was a really surreal time, almost can't believe it ever happened. Hope none of this has upset or worried you, wanted to give you an honest story of our experience.

Minoush Thank you :) No you haven't upset me, I have sort of got used to the idea that my DS will likely need an op and I would much rather hear your honest experience rather than have a sugar coated version, I am someone who does better having information than being in the dark iykwim.
So pleased that your DD is doing so well and great to know that JR gave you such good support

Hi,

I just wanted to come back and share my thoughts post op as this is the first thread that comes up if you search for craniosynostosis on this site.

My DS was diagnosed with sagittal synostosis at 3 months and we've just had the first op - springs put in at GOSH at 6 months. We only discovered my son's headshape was due to cranio because my friends mum is the specialist nurse at Alder Hay. I thought all baby's had funny shaped heads. Anyway, if you've just discovered that your baby may have cranio and you're reading this, you'll read everywhere that the parents suffer more than the child and that they bounce back quickly. I can't believe how true they both are! The day after the operation, my son was shouting to be let up and out of his cot, he was really boisterous, the following two days have been the same. If anything, he's more smiley and active than usual, I wonder if the extra space in his head has helped him already although there were no signs of intercranial pressure yet.

Definitely go to craniokids because you'll find the contact details of someone who's child has the same as your child or is being treated in the same place as your child and it's enormously helpful to get an understanding of their experience before you go through your own.

Xx

I need some help please.
My daughter, now 5 1/2 was supposed to have a surgery to correct her unicoronal synostosis, but it didn't happen because of father's strong and unreasonable objections (despite two court orders!) GOSH chose to take my child's name off the waiting list, completely ignoring the court orders so the fight continues.
I am looking for ANY parent who opted out of this type of surgery. I need to find out about how their kid's condition progressed (just in case the judge decides that my little girl doesn't need it)
I am so worried that her condition worsens with time exposing her to teasing and bullying at school and would want to protect her from it. She's so sensitive