No smiles and falling head circumference

[worriedlassy]

Have NC for this as identifying to those that know me

Dd is 10 weeks and still not smiling.
referred to paediatrician who wondered if her eyesight is poor so awaiting emergency eye appointment now.
Fontanelle is closed/smaller than usual and head circumference had dropped from 75th to 45th since birth. Weight is pretty stable along the 86 th. she mentioned this may be an issue in passing but it has freaked me out.
X-rays showed no craniosynostosis.

Each hour that she doesn't respond to me I'm getting mor and more upset and just wondered if anyone had any experience please

[IAmSeriousAndDontCallMeShirley]

Hi worried,

My daughter was a late smiler too, caused me a lot of anxiety. Slight difference as we knew she has a genetic syndrome that causes craniosynostosis.

It might be worth asking for a CT scan as X-Ray does not reliably show fusion in the skull. Other than a wacky headshape the x-rays looked normal. But the CT showed very clearly two sutures are fused.

Was you baby full term? As if she was early that can also delay milestones.

I hope she smiles for you soon, I know how agonising the wait is.

[worriedlassy]

Thank you
She was 38w4d so not preterm

[allthegoodnameshavebeentaken]

Head circumference is notoriously difficult to measure accurately, DS skipped around the centiles in a similar manner but we were told it was probably just that he wasn't being measured in precisely the same place each time. He was being seen by a PHN, GP, physio and paediatrician in that time and not one of them was worried about it.

[worriedlassy]

Thank you again. You're making me feel a little better. Still terrified though.
Will ask about the CT when I next see consultant. Thank you for your advice

[BarbarianMum]

Ds2 has craniosynostosis diagnosed by CT scan (our experience was the opposite to IAMSerious as Xrays showed his condition in being more serious than it turned out to be). One thing I learnt from the whole episode was that head circumferance is very tricky to measure in babies and even slight misalignment of the tape makes quite a big difference in the reading you get. So although 75% -45% sounds terrifying, the reality might easily be less extreme, esp if the birth measurement was casually taken at a time they didn't suspect a problem.

- try and take it a day at a time and enjoy your dd. I well remember how awful the waiting and not knowing are and I really regret now that I 'lost' 3 months of ds2's babyhood to anxiety.

[Witchend]

Does she respond to you? Track things, look at you?

Head circumference is notoriously slightly better than a random number generator.
Ds's head went down from 50% to 9% in a matter of weeks. Conclusion drawn was the first measurements were probably wrong.

On smiling, one of mine didn't really smile on queue. Even at 6 months I wasn't confident she'd smiled (the other two had no doubts at all). She just was a serious baby-who turned into a very smiley child.

[worriedlassy]

No, she fixes but no tracking.
She will stick tongue out for DH but not me but only if he gets up very close

[octoberfarm]

Don't have anything helpful to add on the head circumference side of things, but my DS (just about to turn 6 months) didn't smile until 11/12 weeks (and I tried everything) but he's now smiling up a storm. Hope your LO gets there soon, and good luck :)

[IAmSeriousAndDontCallMeShirley]

I know from experience how hard it is, but I agree with barbarianmum
Try not to let the worry steal these early weeks/months from you.
I feel like I missed out on the first 12 weeks worrying about genetic results etc. Until I realised that my worrying wouldn't change the outcome.

After that I relaxed into being her mum, and things improved.

You are in good hands, and the right people will be looking after you all to work out what (if anything) is wrong.

Keeping everything crossed for you

[Winifredgoose]

I have no idea about your specific concerns, but I know from my own children and friends and family, that measurement have a large room for error. For example, my second child was recorded as being 6 cm shorter at six weeks, than at birth. I hope your child smiles soon, and the drop in head centiles are a red herring.

[worriedlassy]

Thank you for your kind wishes. We have an appointment with an eye specialist in a few weeks. Still no smiles though

[worriedlassy]

So we were admitted after dd developed seizures and we're awaiting a probable diagnosis of infantile spasms.

Trying to stay away from the internet as it's a terrifyingly place

[guiltynetter]

so sorry to hear that worried :(

[worriedlassy]

Confirmed diagnosis now

[crashdoll]

I'm sorry you're little one is poorly. It's so hard.

[ChangedMyMind]

Sorry that things aren't good at the moment

[smartiecake]

Hello worriedlassy.

I have been following your thread. I
am sorry to hear your DD has been Dx today. When you are ready the SN boards here are very supportive and helpful.
Take care of yourself and keep talking. You are not alone.

[GrizzyFrontBum]

worriedlassy giant hugs x

[worriedlassy]

Thanks guys. We're finally home with a gazillion drugs

[Runningbutnotscared]

How are you feeling?

[Runningbutnotscared]

[worriedlassy]

Exhausted and terrified but glad of an interim diagnosis

[DearMrDilkington]

[Runningbutnotscared]

The Samaritins are around 24hrs a day if you feel the need to talk to someone impartial about what's going on. They are not just there for suicidal people!
It's a free call number now, so if you want a chat just to run through/ offload everything that you have been through in the last day or so, don't hesitate to give them a call.

Sometimes it's useful to speak out loud to someone outside of your family / friendship group.

I hope you get some sleep.

[PrincessMoana]

DD smiled very late. She took a long time to engage with the world, would still rather watch than do or speak and she's 6. She has short term memory loss. It affects her speech and comprehension and her ability to do tasks. Oddly she has long term memory. She is in normal school with some support.

I hope your DD settles down and that you get the support you need. I found that the hard part, since the diagnosis we've actually been well supported.