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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

baby with misshapen head - does it really get better by itself?

70 replies

Willow33 · 25/07/2015 23:19

Would love to hear from other parents. DD who is 10 weeks old has torticollis and so looks to her right most of the time. So head is misshaped due to this. Dr said it will sort itself out by doing tummy time. However my search of forums says people can expect to shell out up to £2k for special orthotics helmet!
This is because they are not available on the NHS but still recommended by many parents. Many people say to ignore drs advice if they suggest 'wait it out'.

OP posts:

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backtowork2015 · 28/07/2015 09:43

I read that the nhs in Bristol prescribes them

Loops81 · 28/07/2015 13:47

We had exactly the same issue and I agonised over helmet therapy too. Decided against it but did do physio, cranial osteopathy, got a special pillow that reduced the pressure on her head, used the sling more than pram...and tried (but mostly failed) to get her to lie on her other side at night. At around 9 months she decided to start sleeping on her tummy and I have noticed a huge improvement since. At 15 months it has rounded out at the back and is almost (not completely yet) symmetrical. She also has good hair, which means it isn't noticeable at all. So I do believe in most cases it will sort itself out - IF you can get the baby to stop lying on that side so much. It is really stressful though. I share other posters' frustration with the NHS not taking it seriously. In most cases it could easily be avoided by telling new parents to look out for their baby favouring one side.

Findtheoldme · 28/07/2015 18:12

Bigbadgeorge - there is no discomfort at all in wearing the helmet. Doing the casting is not pleasant but the wearing of the helmet is no problem.

I can vouch for it working for my DC and know for sure it wasn't going to round out itself.

You would never know if it was going to round out on its own if you do the helmet but if you do nothing then it is 50/50 I guess and then there comes a point when starting with the helmet is too late.

It really isn't just about how the head looks but sometimes you get people who can't see past that.

castlesintheair · 28/07/2015 18:29

Findtheoldme, out of interest what else is it about beside the cosmetics?

Findtheoldme · 28/07/2015 18:59

The jaw can be misaligned as can the ears which would be a problem if the child was to need glasses.

There will always be people with differing views and experiences but blithely saying the child is going to go through "considerable discomfort" as a previous poster did is not on when it isn't true and the poster clearly has no experience.

backtowork2015 · 28/07/2015 20:15

and opthalmic consequences. caused a squint in my ds

cakebaby · 28/07/2015 20:56

My ds had torticollis & couldn't turn his head to look to his right or feed from my left. I took him to a cranial osteopath and on the way home in the car was looking to the right right for the first time. He was 2 weeks old. It was private treatment, cost £40 per session, he had 4.

Loops81 · 28/07/2015 21:04

Even if it is "just about the way the head looks" it is still a huge worry for parents. People (medical professionals included) often made me feel like I was being vain for stressing about the shape of my baby's head. It isn't like I need her to be the most beautiful baby in the world, but heads just ARE symmetrical, aren't they? Have you ever seen an animal with an asymetrical head? And I felt incredibly guilty that it was something I could have prevented, if I'd had the knowledge earlier. If a baby had misshapen legs or arms, you'd try to do something about it, so why would a head be any different?

ThumbWitchesAbroad · 29/07/2015 02:36

It's not just vanity - if you read this article it suggests that in a subset of children with plagiocephaly, there are longterm effects on behaviour, development, possibly even eye movements (depending on severity of deformation); and this article suggests that it could affect auditory processing as well.

There are other articles suggesting that there are no neurological or developmental effects from unresolved plagiocephaly - but the fact that there are articles saying things on both sides would, to me, suggest the cautionary approach.

Although not all children with plagiocephaly will have problems later, some are likely to if it's not corrected - so it needs to be corrected to avoid the possibility, and clearly most medics know that as they give advice on how to correct it.

Original poster

Willow33 · 29/07/2015 12:59

We are in the London area. Can anyone give me the details of physio they used and osteopath used pls. Also paediatrician too.
Also what is repositioning?
Thanks

OP posts:

ThumbWitchesAbroad · 29/07/2015 13:07

I would have given you my cranial osteopath's details but sadly she's moved to flippin' Shropshire! bit of a trek for you. :(

Loops81 · 29/07/2015 14:14

Repositioning is just moving them around when they're asleep so they're not on the favoured side all the time, I think.

We were referred by our GP to physio at St Thomas's hospital, and they were great. The cranial osteopath we used was in south-east London, if that's anywhere near you then PM me. Also if you want any other advice on the things we did to improve things.

post · 29/07/2015 14:24

OP, Stuart Korth at the Osteopathic centre for children in London is absolutely amazing. I used to work with osteopaths who trained under him, he's seen my ds, and he'd be my first port of call

occ.uk.com

backtowork2015 · 29/07/2015 17:09

we saw Mr Simon Eccles at great portland street for a very objective opinion on helmeting. if you go to a helmet company you won't get an impartial opinion...they just want your credit card number. This guy was great. He acknowledged helneting was useful in sine circumstances and advised us against it. we were referred for physio on nhs in Watford area, is this near you? I can give you her name if it is

Original poster

Willow33 · 31/07/2015 20:03

Yes not too far backtowork2015 so pls do. Went to see gp today and he will refer dd to physio and paediatrician on NHS.

OP posts:

backtowork2015 · 31/07/2015 20:50

physio was karen woollard at peace children's centre Watford. she used to work at gosh and I thought she was wonderful. how's the repositioning going? are you managing to keep her off her flattened side?

Needaninsight · 31/07/2015 21:00

See a cranial osteo and the sooner the baby.

My 15month old..oh my goodness..I cried most days about his head. It was totally flat and all to one side. He started seeing an osteo at 9 weeks and I wish wish wish I'd taken him earlier. If I have baby no 3, I will be taking them from 1 day old just in case!!!

However DO NOT (repeat!) get a helmet. They are proven not to work. Why you would saddle a baby with the trauma of a helmet that is uncomfortable, hot etc etc I have no idea :( Obviously makes the parents feel better that they're doing something (and paying a lot of money for the privilege) but cruel for the baby imo.

I have read at least 3 articles in The Daily Mail (!) of babies with 'horrendously' mis-shapen heads, whose mums have done a 'go fund' me type thing to pay out the £2k for these things. Not one of these baby's heads was as bad as my sons.

Anyway. Fast forward. He now has hair. That helps. Enormously. You now would genuinely not notice. I notice. Especially when his hair is wet, but then I'm looking for it. i'm fairly certain as he gets older it will get even better.

The paed I was seeing (for other issues) pointed out to me that most people have very weird shaped heads. So I started looking. He is right. He also said it's nearly criminal that you are charged £2k for a helmet. The reason the NHS don't really offer them is because they do not work. The head will nearly always sort itself out. Certainly, it wasn't something I wanted to subject my son to.

Anyway. I'm rambling. See an osteo and now. Our osteo was amazing. I think we saw her until he was 10 months old and then I realised myself time would sort the problem that was left.

howtodrainyourflagon · 31/07/2015 22:08

Ds1 had severe plagiocephaly and brachycephaly caused by torticollis. We saw GP and paediatrician who said he could potentially have helmet treatment on NHS but by the time he'd got through the waiting list it would be too late. We opted for private treatment - it cost 2k and ds1 never seemed uncomfortable in the helmet. Over six months his forehead bulge disappeared, his ears aligned and his eyes aligned. There is still a very minor flat patch at the side but it's much better than it was.

He had very bad glue ear on his squashed side which continued until he was about seven.

Ds2 also had torticollis but he was referred for physio at four weeks old and he didn't have a chance to develop a flat patch.

At ten weeks your do is young enough for the physio to make a real difference. I did the exercises with da after every feed. A private physio appointment will cost a lot less than a helmet. Your he may be able to show you the exercises too - or you can google them.

If you do need to go down the helmet route, I can tell you nine years on that it worked well for us and I don't regret it for a moment. You'd never tell ds1 had such problems as a baby.

ThumbWitchesAbroad · 31/07/2015 23:44

Needan - it's wrong to say the helmets don't work - but they don't work for every case so medical advice should be sought before taking that route.

crapfatbanana · 31/07/2015 23:49

My nine year old has a funny shaped head still, because the doctor refused to do anything about his plagioencephaly as a baby and I couldn't afford to go private.

Luckily, it's quite well disguised by his hair now, but I'm still cross that I was fobbed off.

BabyMum1 · 01/08/2015 09:50

OP get ur baby to sleep on their tummy with a sensor pad under the mattress for monitoring
That's what I did for both children after ds1 had flat head at 5wks old
They both have perfect round heads now!

Also helmets always work except for craniosystosis where the scull fused early and they need surgery. But that's totally different and they way to diagnose is that the ear on the flat side is further back rather than front

Findtheoldme · 01/08/2015 23:03

Need - please don't be so dramatic and thoughtless. Helmets do work. They might not work in every case but they work in some. Please feel free to take it up with our doctor and ask him to explain his paper if you are so certain you know best. And there is no trauma to the child .

You might be happy that hair has covers your child's head but it is not just about how the head looks.

Needaninsight · 01/08/2015 23:32

Of course a doctor who is charging £2k a pop is going to tell you that a helmet is necessary

And for those who say it's not uncomfortable..

Did you try one on before forcing your baby to wear it for 10+hours a day??

I actually have. They're bloody awful. Your head gets sweaty. It feels constrictive. I found it claustrophobic. No way on god's earth was I going to put my poor baby in one just because i had a spare £2k knocking around.

There are other routes to take. The extortionate cost of these things mean that those who can afford them don't bother to look into alternatives and those that can't afford them feel that they must have missed out on some wonder option.

Luckily, we had a fabulous paed and a brilliant osteo.

It's not thoughtless to tell the OP to consider more natural, kind methods first. It's not dramatic, because my son's head was awful. It now isn't.

ThumbWitchesAbroad · 01/08/2015 23:52

No what is thoughtless and dramatic is to shout that they don't work, when actually, they do for some people.

Needaninsight · 02/08/2015 14:12

No, they don't work.

The head would have righted itself anyway.

All you've done is put a 'bandage' on the problem and paid heavily ££ for the discomfort for the baby.

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