Plagiocephaly/torticollis (NAB3, Palgio UK? help?)

[kekouan]

I've already been fobbed off by my GP and the HV about plagio - they've so far both said that it's purely cosmetic and that it will go away in time.

I'm convinced that DS has problems with his neck and can't move it to the left properly, and this is obviously going to make the flt spot worse.

Please can you give me some reasons why it isn't cosmetic, as I don't really know that much about it). DS has his 8 week check up on Monday and I want some info to throw at the doctor so he'll refer us to the physiotherapist.

Thanks

sorry, typing has gone to hell since I went on mat leave

It CAN go away in time - my DD had quite severe plagio and it did go away by itself, she is 15 months now and you can't notice. And she did sit up very late (9-10 months). I think the reason why people get helmets its you can't GUARANTEE it will go away on its own so it is a big gamble to leave it and just hope it will. I don't agree that all health visitors just say it will go away just to "fob you off" as my best friend of 30 years is a health visitor, and she told me (and would not lie as she loves my DD) that she had not seen any cases where it did not go away. However before anyone who got helmets flames me, I do understand the reason behind getting a helmet, in that you can't know if it will go away, and if it doesn't it can be very unsightly and lead to more than cosmetic problems. I don't feel you should be getting hugely stressed and worrying that your son will be damaged for life yet, as repositioning can be very helpful indeed, especially started at such a young age!!

If the torticollis is not addressed it will not go away though, so its very important to get that physio referral IMO!

er.. I didn't say that all health visitors would fob me off.. i said that MY health visitor fobbed me off.

Seems stupid to ignore it when some relatively simple measures could completely get rid of it just by repositioning, which wont work if he has torticollis. He's nearly 8 weeks now, so there's time to do it and for it to completely go. If health profesionals keep fobbing me off, and the torticollis isn't resolved, and the plagio gets worse it will cause problems.

and i don't care if it's only cosmetic anyway, a severely flat head in a boy isn't a good look, especially if it is making his face asymetrical as well (his ears are already getting more lopsided - he was very symmetrical at birth)

I agree the torticollis needs to be addressed if it is to resolve itself. I didn't think you said all health visitors said that, just I have heard many people saying it. I certainly wasn't telling you to ignore it, and I'm sorry if it came across that way. I was misguidedly trying to be reassuring. Anyway good luck with it all

My ds had severe plagiocephaly we noticed at around 8 weeks too. You definately need to get you doctor to refer you to physio if your ds has torticollis as it won't resolve itself.

If your doctor won't refer you could try cranial osteopathy.

At 8 weeks it's the perfect time to try repositioning but you do have to be religious about it. Avoid too much time in bouncy chairs, car seats and when you do use them put a rolled up tea towel behind his neck to take pressure off his head.

I would also recomend investing in a sleepcurve mattress too.

As for whether it's just cosmetic well I researched plagio for months and it's an incredibly under researched area so I never found anything conclusive. But I agree I think the cosmetic issue of severe plagio in itself warrants concern.

I don't regret for a minute getting DS treated.

Think we met on another thread

I would definately go in with the torticollis 'card' - not surprisingly, health professionals are more likely to respond well to this (treatable on NHS) than you talking about plagio (not - usually- treatable on NHS). The NHS 'line' on plagio is generally that it is cosmetic, not a medical problem. You're really going to be fighting the system to convince them otherwise (I've talked to one of the GOST advisers about it!)

From my reading of the papers, it's a tricky one. Children with plagio have statistically more problems with eyesight & (I think) general mobility for example, but no studies as yet have established whether there is a causal link (eg it feels more likely that plagio is caused by lack of mobility than the other way around). Obviously, there are impacts of a non-perfect head (eg difficulties wearing glasses/riding hats/whatever) but imho, probably nothing that would convince an underfunded NHS that plagio is a real cause for concern

The key thing you need is to get a tort referal. if you can get one of those, & try and sort that out, you've got a really good chance of doing a lot with repositioning, having caught things so early (8 weeks is still very, very early).
Say you've noticed a lack of mobility & would like a physio referal to have torticollis explored. I have to say, we ended up paying for a private paed appt, and it was absolutely worth it - he diagnosed tort straight away, & got us back into the NHS physio system within a week or so (we'd see GPs & HV about dd's headshape, and been told not to worry about it. No-one thought she had tort

The only NHS hospital that I know off to treat plagio is Bristol Frenchay, I'm not sure if they still do as I think it was for research.

Unfortunately the technology they were using was just not as advanced as the private helmet providers so results were poor and therefore unlikely to convince anyone that helmets should be provided by NHS.

You will be banging you head against a brick wall to get treatment for plagio but should have more success with the tort route.

At 8 weeks your ds is young enough to have his head shape improve but only with his neck probs resolved and lots andlots of repositioning.

If his headshape shows no sign of improvement by the time he is 5 months old you could make an appointment with a helmet provider for an initial assessment (it's free) and they will tell you the severity of the plagio.

We were put under no pressure to go ahead with treatment, infact after the first assessment my DH said "no" to a helmet there and then and the consultant accepted our decision without question.

It was only because I desperately wanted to go for treatment that DH agreed

Oh, yes, Bristol did do them for a while - as did Glasgow - think they've both stopped now (but could be wrong about Bristol)

Oh, & agree with Conor that you need to be religious about repositioning. It is tough (ime, but I was trying whilst also fighting tort), but some people get great results with it.

(I think I may have offered you our sleepcurve on another thread - assume you didn't want it, or did I just never recheck the thread

kekouan - I understand. I do hope you manage to get that referral!

focus on the tort aspect- your baby needs to be able to use his neck freely. Its the tort that will be the medical problem long-term.
nhs will only see plagio as a cosmetic problem- they can't afford to acknowledge it as anything other.
Sort out the tort, then concentrate on repo.

FWIW, we went down helmet treatment route too, and don't regret it one bit- the difference to dd's features is extraordinary.

OK kekouan - will try & find it & check sizing for you - its the smaller cot size, I think - is your ds still in a moses basket?

funnypeculiar - he's in a crib at the moment, but I put him in the cot during the day, so it' would definitely help.

He's got a little pillow too, so when we're out and he's in the pram he has that, and whenever he's on his playmat. Not sure it's making it better, but it's definitely not getting worse.

We did get a referral for my DD's torticollis, but it had resolved by the time we got a physio appointment as there was a mix up in the system (typical!) I realised that I had to try something myself as it was taking so long so spent lots of time putting her toys and things on the opposite side to encourage her to look, and this did the trick. She was a bit older than your son though and her torticollis was fairly mild. Worth a try though!!

( I think we overdid it though, as her head started to go flat on the other side as well, fortunately that disappeared!!)

funnypeculiar - sorry to hassle, any news on that mattress?

This might be useful www.plagiocephalyuk.co.uk/

We put ds into an Amby Hammock and use the repositioning tips always. We found our G.P. very dismissive and the advice given was that when ds's hair grew in, no one would notice!

had another check up and GP is happy that there is no torticollis, and that the plagio is actually very mild. 3 people have checked him over now, and I'm satisfied that there is nothing wrong with his neck (movement has been improving)

The GP said that if I was still worried in a month to come back and he would refer me to the physio - which sounds fair enough to me

still doing the repositioning things and I'm actually seeing an improvement in the plagio already, so am no longer worried.

hi can i ask those whos babys or have had torticollis how or what happens wi them my little girl has postures to the right or left for hours on a time then goes back, they have saiod i dd as some kind of torticollis , but am just not sure reading up on it,

any help and advice i would realy appreciate

DD had Psysio referral straight away and we had to do exercises with her - it was hard going though. I hope you get referred soon as it does need to be treated early on.

Oh, just read you have been back to GP .

hi, dd and ds both had plagio. dd is now almost 3, she has got loads hair and its not noticeable. but when her hair wet it still noticable. it breaks my heart, i feel really bad.
she showed plagio at 12weeks, and she only looked to her right. gp refered it was due to she was breech amd had less space to move her head and etc.. to be honest uk medicals are not taking this serious, that imo.
i had no support from dh and family, all said its will correct when she can sit up and move. i only used repositioning, but it didnt hekp much
ds showed plagio at 8 weeks, soon i bought sleepcurve mattress but he didnt like it for some reason. its kept under his cotbed for months now.
i bought goi-goi pilllow and will recommend it. although in uk its not recommened to use baby pillows. it certainly took the weight of his head when his in his favourite side when baby. now he moves his head a lot more and flat spot is very reduced. they only 10-12pounds from official website.
i agree, that little boys are need well treated otherwise they might get bullied at school. i must sound one of those ott propective mums, but when you are parent you look things different way
i hope you get refered to physio.

DD2(5 months) has just been discharged from physio.
Plagiocephaly and torticollis picked up at 6 week check, still have to keep doing exercises but head shape is slowly beginning to improve.
Think it was her delivery, although a cs, they needed to use forceps to get her out and it was a "bit"of a struggle!
Hope you get things sorted out soon, physio did help us lots,