Worried possible craniosynostosis In 7 week old who sleeps just all the time?

[Craniosynostosis]

I mentioned this to our GP wanting him to see DS but he said as he’s feeding so well still and gaining weight I can just mention it to the health visitor (who I’m not sure has her clinic today with bank holiday etc as no answer).
does anyone have experience of this or advice? DS has a ridge at the top of his head and his head looks very long and thin to me (so much so he’ll only sleep with it to one side or other not lie on the back of his head)
TIA

That sounds perfectly normal. Are you struggling with anxiety? Can you get the health visitor to visit and look and then either reassure you or help escalate with the GP for you?

Thanks for the reply and yes I could just wait and ask what health visitor thinks initially and she’s very helpful to chat to.
No, I don’t usually have anxiety, and I’m delighted if he’s just a good sleeper but it feels very odd to me he’s hardly awake ever too. Last time I had an instinct something was up I was right in the end though it was for something quite different (Lyme disease)

I tend to be quite sensible but definitely tired and yes hopefully it may still be within ‘ normal’

Why go straight to “anxiety?” So rude!

Trust your instincts OP! At 7 weeks a baby will be more awake than they were at newborn stage. If you feel like something is wrong it’s better to push for it to be assessed than regret keeping quiet about it

If there is no health visitor clinic then call NHS Direct and ask for an appointment today.

It’s not rude @SQLserved the OP has a very specific potential diagnosis, the GP thinks the baby is fine, and a baby lying it’s head to one side rather than lying straight is totally normal. Lots of new mums feel very anxious, especially if something complicated has come before, and that’s not rude or something to be ashamed of, it’s a realistic option that people shouldn’t be afraid to explore. I’m sure the OP would far rather she has anxiety than her baby does actually have this condition.

However OP I’m sorry if you felt that was dismissive, it’s not meant to be, but obviously without asking I have no idea if you feel anxious or not. I agree with trusting your instincts, is the baby being so sleepy a new thing or have they sort of not progressed from the newborn sleepiness? Phoning 111 and explaining baby is sleepier than normal and you are worried about the ridge and your gut is telling you something isn’t right may be enough to get you an out of hours GP appointment, lots of health care professionals are happy to accept you no your baby best.

Thanks for your kind replies . (I’m not a new mum in that sense as this is our 3rd baby and am not usually worried unless something doesn’t feel right.) I just thought the GP might look at baby given my concern, I don’t normally mind phone appointments but there’s a difference in being able to actually see what I’m referring to. I had routine hospital appointment recently and a sonographer there commented on DS’ head. I mentioned this to the gp too but he said if they’d been worried they’d have suggested it being looked at . I’ll just see how it goes I guess and push harder if I carry on being uneasy . He’s been awake properly twice today and not for long, I have to wake him to feed him in his sleep he sleeps so long .

By the way he seems unusually content and fine developmentally though, so it may still be that he’s just sleepy ! He always has been and even when I was pregnant he wasn’t particularly active .

I have a 6 week old with diagnosed craniosynostosis (trigonocephaly, so the metopic ridge), the only way to confirm it is with a CT scan. If your doctor isn't worried and won't refer you it might be worth getting a second opinion from another doctor/paediatrician! My son is still very sleepy too, but he was prem so that part hasn't been too much of a worry yet. Trust your instincts I'd say!

My son was born with special needs ( unbeknown to me ) .. he was incredibly sleepy and I was told this is an early sign there is something amiss .. 7 week ( term ) babies don't usually sleep all the time like mine did ..
trust your instincts and ask for help , I was also told I was over anxious and I'm far from it but 'knew ' something was amiss!

thank you . I had wondered what excessive sleepiness can indicate if anything and been at a loss as he’s so responsive and happy when awake (smiles and very focussed, and interested in us / ‘talks’ back when we chat to him).
But yes I do hope I can get him looked at properly or that he grows out of being so sleepy.

My GP missed my son having craniosynostosis at the routine check after he was born - many know nothing of craniosynostosis!!

The paediatrician noticed and did the referral when he was around 4 months old. Diagnosed at 9 months old and surgery at 15 months old.

Hopefully it's not craniosynostosis for your baby OP💐

My DS was born with craniosynostosis ... fortunately he was diagnosed at birth (by a medical student), it is quite a rare condition so not always noticed. There is an excellent charity called Headlines , check their website for advice and insist on a second option. My DS also had an unusual shaped head similar to what you have described

My DS had corrective surgery at six months and no side effects at all ... he is now 21 . Feel free to pm me if I can be of help.

Hi op my little boy was super sleepy when born and he is now 6 months old, I was initially worried also thinking how can a baby be so quiet and sleep a lot. He is just a brilliant sleeper and I have never ever had to rock him to sleep at night he goes down like a dream and only wakes for 1 bottle on time each night. When awake he is super alert and doing amazing with his development, he just loves his sleep.

I also have an older child who was the opposite so I was just in shock with how simple he is to care for.

DS1 was born with craniosynostosis. It was missed by the GP at his 6/52 check although I made repeated appointments as I knew his head shape wasn't normal. He was a very difficult baby and we ended up with an admission to hospital at 14 weeks. That got us a referral to a specialist and he finally got a diagnosis at 9 months, surgeries started at 15 months.

Our health visitor was lovely and very supportive. She couldn't refer to a specialist but did do monthly visits to measure his OFC and provide emotional support. She also was a great back up voice to the dismissive GP.

I love mumsnet and so grateful for each of these perspectives , as you think you are asking quite an unusual question and yet these answers are full of similar experience and it’s so comforting to have people to talk to. And Greenisle I’m glad yours was simply a sleepy baby as hoping that’ll be the conclusion for us. It’s interesting to hear that craniosynostosis isn’t that commonly recognised, if ever it is that.
I’m not worrying, just grateful to be learning and gaining perspective as I keep an eye on it . Thank you all again!💐

I know nothing about craniosynostosis, but my eldest was one of those sleepy babies. I don't think she woke for long until she was about 3 months! At 7 weeks she slept reliably 12 hours at night, and probably 8 out of the remaining 12.
Revenge came in the form of #2.

Just as an update our health visitor was so helpful and referred DS straight to the hospital in 2 days time and agreed with my concern . She also noted that his head size has jumped from 70th to over 90th centile in 2 weeks. I’m so grateful we can get a medical opinion on it and hope it’ll be ok . And Ragwort I’ll be so thankful to ask you any questions if needed and will PM you , thank you !

User48751490 thank you for your post too and out of interest is that delay because the referral took a long time? I really hope he’s doing well. I have been reading that if caught very early then treatment is easier but I wonder what nhs times are like as know they are usually under a lot of pressure .

Ds2 has craniosynostosis, diagnosed at 6 weeks (though missed by the gp). In his case it was the metopic sutures that closed but just late enough so that he didn't need surgery. He was under the neurosurgical team til 6 months, then discharged. Slept and fed normally.

Although the surgery is done early in life its not urgent unless there are other complications like raised intercranial pressure and fitting (you would know about these). So you do have some time.

Hi I know this is an older post but my health visitor is querying craino in my 4 month old??
He looks perfect from the front but his head bulges at the back. Any advice would be great!

My advice is get it checked out. If he has craniosynostosis it's perfectly treatable (although quite traumatic for you) but you need to know now, whilst he's young and its not super urgent.

I agree that you should get it checked out, I posted earlier (2/6/22) as my DS was born with this condition. It was corrected surgically and no repercussions- he is 21 now. You may have to be fairly forceful about seeing a specialist as it is a rare condition and not all GPS & Health Professionals will have seen it. There is also an excellent charity called Headlines who can give you support and advice.