craniosynostosis/ craniofacial?? anyone out there who can help?

[isitme1]

Ds has an odd shaped head which the gp dismissed.
Ds was ill and we ended up in hospital.

3days on we are still here and I mentioned it to the dr who saw us the first night.
She was that concerned that she came round 4times to remind me to ask drs doing the ward round in the morning.

He had his head scan today and we get the report tomorrow.
The paed said by looking at him it does look like craniosystosis.
I just need to understand and know what to ask them.

We are known to the children's hospital due to dc1 SN.
I did think this baby was the healthy one.
Either way he's my baby.
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Thank you.

1.Which type does he have

1. How old is he now and how old was he when he was diagnosed

3 how was he diagnosed 4 did he need surgery

Friend has just dropped off the leaflet so I can go armed with that tomorrow. I know it's a fight as these gps are horrible and care about staying within budget rather than making sure patient is well.

The lady who rang was very helpful.

Absolutely wonderful.
Ds is 4 months old. She said he does need to be seen at specialist centre. How do I convince them to refer him.

My DS has/had never sure which tense to use! Sagittal craniosynostosis (centre suture front-back) so his head was growing long and thin front to back. He's just over two now and had surgery at John Radcliffe in Oxford at 13 months. We were very lucky and as I understand it very unusual in that suspected craniosynostosis was picked up when I had a growth scan at 35weeks preg. It was confirmed first with an ultrasound at 2 days old and the 'properly' confirmed with an MRI when he was about 3 months. We we're initially under the are of a peadiatrician at our local hospital who kept a monthly check on DS until our referral to Oxford went through. I'm not sure of it was him who referred I think it was.

The thing is most GP's won't ever see a case of craniosynostosis so I think you might really need to push your one by the sounds of it. Tbh your GP sounds a bit crap an chance of seeing a different one? If they won't refer you to one of the specialist centres make sure they refer you to a peadiatrician at your local hospital. If I was you I would be tempted no to leave until they had heads are not things to be messed with.

They shouldn't have a problem referring him as it wont cost him its a different commission so he shouldn't have a problem.

I will notleave until he refers him.
I will kick up a fuss.
He nearly killed my eldest as he wouldn't refer him

Got his appointment this morning.

Ive highlighted all the relevant info like it won't cost him and all patients with suspected cranio problems should be referred to get specialist treatment.

Ive even rang through to Birmingham children's hospital and got a name for the referral (so I can say they are expecting a referral for him)
Its quite a drive but was advised by headlines that either here or Oxford that will see him quicker. Gosh dont accept gp referral for this and Liverpool have a bit of a wait.

Wish me luck
Really worried about what he will say.
If he says no I will break down and cry

Sounds like you are well prepared! Good luck and don't take no for an answer. I assume Birmingham are closer to you than Oxford so push for there. With there being so few centres it does mean a fair bit of travelling. Let us know how you get on

I sat there an hour arguing
He wasnt taking it
He said
If a patient says refer me to America if you dont I will kill you...

I said dr I didn't say I was going to kill you or harm you in any way
Arsehole.
Ive only just managed to get him referred to paediatric locally. So will ask them to refer him to the specialist.

Dm said if all else fails we will go up to bham children's a + e and go that way instead.

We are giving it a week for the letter to come through.

I sat there crying my eyes out.

They nearly killed my eldest by letting him go so long with out food amd water as he was scared to eat.

Took me 18months to get him sorted.

The only reason why im still there is because of ds1 medication it costs 150 a bottle every 2weeks and we fought hard for that. He won't get it at another surgery

God isit your GP sound utterly utterly awful. Is there not another GP at the same practice you can see even?
Good that you got a referral to a local pead though - do you know their name. I think referrals usually take more than a week to go through but if you know who it is you can always call their secretary and chase it up.
If that fails I agree go to the hospital and do it that way, but you do have time on your side at the moment I think. I know the 4 craniofacial centres all have different ways of doing things but certainly at Oxford the normal window for operating on craniosynostosis is 12-15 months.
I do understand your worry though for the whole of my DS's first year almost every time he cried I wondered if it was to do with his head.
Keep pushing you are doing a fab job for your DS and keep us up to date/ let me know if I can give you any more info etc

I know the xray they did here was 'ok' apparently but what if they have made a mistake as they aren't trained like those atbthe specialist centres?

There is no way his head is like this for no reason
The 2nd dr that came in to see what was going on said it is craniosynostis.
It affects the full side of him.
I felt something funny in hid back too have done for a while but never linked them all until today.

His back in that side sticks out a little and the foot on that side is going under itself. (The side where the forehead bulges)
Jusy takes the piss that those we put our trust in wrt health will do fuck all.

You are having a horrible time of it, so different from the experience I had with DS's Cranio but we were so lucky to be in the system as early as we were. All I can say is hang in there and keep fighting, you know you are right. As soon as you get seen by one of the centres you will be amazed at how brilliant they are.

Actually Maryz craniosynostosis heads don't 'normalise' over time. The progression of the deformity might not get any worse if you are lucky but the head shape won't be 'normal' in the case of my DS (who also had sagittal) it was evidently getting progressively worse as he aged which from what I've heard from other Cranio parents is more the norm with this condition.
In the vast majority of cases surgery is not 'just' cosmetic. The deformed skull causes the brain to grow in a way it's not meant to which has the potential to cause other problems. Very pleased the hear your DS is doing so well though it must have been very scary for you to have it picked up in such an odd way and late on like that.

I agree with strawberry here if I can lol
Ds head seems to be getting worse.
There was a point when he didn't have the bump on the back and gradually its started to form. His eye was fine at birth and so was the skull above the ear (well didn't stick out as much as it does now)
Your ds is very lucky to have been ok without surgery and as 1 mum to another im really glad you didn't undergo the stress of having to operate.

Ds1 has been operated on a few times (longest I think was around 45mins) but apart from putting his gastric tube in the rest have been minor but the stress of it really gets to you.

Dm thinks we should just take him to Birmingham a+e and see what they say anf then at least hes in thr system.

I did contact that guy from yhe hospital and hopefully he will get back in touch with me and we should get the ball rolling if not Birmingham here we come (well next week lol)

That's not actually a bad idea. Get them to look at his head and feet. So sorry your GP is being obstructive. You can also ask for a second opinion.

On fb theres a lady who got in touch with the hospital and then they gave her a number to ring which happened to be someone higher than gp and they said if gp doesn't agree tell them to ring her. When she mentioned that other women's name he changed tune.

If not then peter should get back to me today
If all else fails a+e it is

I rang petes secretary and shes getting a dr ti get intouch with gp to say the child needs a referral. And then pete himself rang and it went to voicemail he left his number and said he will contact me today or tomorrow.
I was in tears that someone actually cared that much that they were willing to do more work than they had to to help me and ds.

Stay strong now. Once you are seen at one of the specialist units your lo will be in the hands of experts and they will be able to tell you what is going on.

Should they confirm craniosynostosis then please make a formal complaint about your GP.

It was really nice. He even text me lol.
My phone is going everywhere with me now lol.
Thank you

Brilliant isit sounds like things are starting to move forward. I agree re complaint against GP his treatment of you and your DS has been appalling. Sounds like Birmingham are on the case though which is great

Pete from bham got in touch and has seen ds head pics.
He thinks its either postional or a mild case.
He said he cant make it an official diagnosis as hes not physically examined him and sometimes cranio is mot obv wheb you look at the child.
He said if its mild then they wont op until end of next summer so hes in no immediate danger. So we see the paeds here locally and ask for referral.

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