*PLEASE READ THIS* - IT COULD HELP YOUR BABY!!!

[torgrosset]

Hi! My 4½ month old daughter has plagiocephaly (pronounced play-gee-o-kef-a-lee) also known as flat head syndrome and I am wanting to raise awareness with other parents. My daughter has a severe case & her flat spot is assymetrical by 25mm. It is also affecting her ears, forehead and face.

Plagiocephaly is an increasingly common condition in babies in the UK, whereby the head has become flattened at the back. Great Ormond Street Hospital says that some reports estimate that it affects half of all babies under one. It can be caused in the womb before birth, after birth by stiff neck muscles (torticollis), or by excessively long periods of time spent with the head resting in one position on a firm flat surface.

More cases of plagiocephaly have been seen since the advent of the ?back to sleep? campaign, where parents are advised to place their baby to sleep on its back. This advice is good and is saving lives. However, the advice is not complete and should be supplemented with recommendations that would ensure that plagiocephaly is avoided in the first place ? or improved if it is already present. Simply recommending that babies be carried more, be given regular supervised ?tummy time? during the day, be taken off their backs and not placed against hard surfaces continually, would dramatically reduce the incidence of plagiocephaly in this country.

Where plagiocephaly is suspected or even diagnosed, many midwives, health visitors and GPs consistently advise parents that their babies? heads will round out on their own or that future hair growth will cover the deformity. This is simply not true in many cases and is advice that is unacceptable to the majority of parents.

If there is a plagiocephaly or deformity, and the baby is under six months old, an approach called ?repositioning? can be used. This is where the parents minimise the amount of time that the baby rests on the flat spot of the head.

If a baby is over six months old, or if repositioning has become impossible due to the baby?s increased mobility and strength, then cranial remoulding treatment should be considered. A custom-made helmet gently reshapes the baby?s head as it grows, giving it greater symmetry and a better shape. The baby wears the helmet for 23 hours a day, typically for around 12-16 weeks. The helmet is designed to create a pathway for the baby?s head to grow to a more symmetrical shape as it develops. It does not prevent normal growth from occurring, but simply redirects the growth to the places that need it. It fits snugly on all areas of the head except the flattened part, holding them steady and gently guiding the growth only to the flattened area. Treatment is currently not normally available on NHS & parents have to pay around £2000 for private treatment.

There is an on-line petition being run to try to get the NHS educated & to change their views of plagiocephaly. The link to the petition is www.ipetitions.com/campaigns/plagiocephaly/

If you are worried about your babies head shape, there is a UK support group groups.msn.com/PlagioUK/plagiouk.msnw that offer loads of help & advice.

Please help us to help other babies.

Thank you.

Forgot to say GP didnt dismiss my concerns and he did say to go back in 3 months if I felt it was getting worse.

i think the op was really only trying to raise awareness ,her hearts in the right place

advice for parents for prevention

expatinengland.....

people who disagree with the OP, shouldn't be slated for disagreeing!

As an American, I would imagine that you haven't yet come to grips with how the NHS works....

there is not unlimited money available. The money that the NHS has is shared as equally as possible amongst ALL the people who need medical treatment. The important word in that sentance is NEED. Most babies with plagiocephaly do not NEED treatment; in MOST cases it improves over time. In MOST cases it does not cause any long term disability. It is unreasonable to suggest that the NHS should fund helmet treatment for all babies with a flat head, simply because the parents don't like the appearance. The back to sleep advice has been out there for ages, I can't remember how long, and if you look at a class of 5 yr olds, or 10 year olds, very few of them will have any noticeable deformity.

The band "treatment" is promoted largely by companies whose main aim is to make a profit out of the sale of these devices. It is quite reasonable to be sceptical when there is NO decent quality, peer-reviewed research that shows that a) plagiocephaly causes long term problems and b) band therapy produces improved results compared with repositioning. Those who run the NHS have a responsibility to use our money wisely, and for the benefit of the majority. Widespread use of cranial bands would be like throwing money down the drain.

And by the way, I am a health professional,a senior level doctor, working with children but as I don't propose to give up my anonymity, I have no doubt that you won't believe me!

docincognito - while I agree with your comments re the NHS's limited resources, there is peer-reviewed evidence that helmet treatment is better than (a) repositioning and (b) no treatment at all, in cases of moderate and severe plagiocephaly and brachycephaly.
Molding Helmet Therapy in the Treatment of Brachycephaly and Plagiocephaly
Objective Outcome Analysis of Soft Shell Helmet Therapy in the Treatment of Deformational Plagiocephaly
Molding Helmet Therapy in the Treatment of Brachycephaly and Plagiocephaly
Active Counterpositioning or Orthotic Device to Treat Positional Plagiocephaly

The NHS clinical answers website also gives details of reviews supporting the use of orthoses here.

sorry about punctuation

The whole point of doing something is that there is a window of opportunity to get something done, and if you decide to wait and see if it sorts itself out, and then it doesn't you are stuck.

Doc incognito,
I am not suggesting that all GP's /paediatricians are ignorant of the current research in this area but my experience has been that they are NOT fully aware of the CURRENT research in this area.

You are absolutely right that the NHS has to make difficult decisions regarding resources but let the policy makers and budget holders stand up and say, we know that helmet therapy is more effective than other approaches, we know that other countries do fund treatment because there are well documented issues associated with NOT treating (both cosmetic and otherwise) ,we know that many parents have great concerns about this issue, we do NOT at this stage know what the ramifications may be for these untreated children as adults but DESPITE all this we will continue to prioritise other needs. At least this would be honest and would avoid the constant dismissal by the medical professionals. Unfortunately the NHS has historically and will probably continue to take the stance that if they do not offer treatment for a particular condition then it follows it should not be treated??????

Please follow the links supplied by Beowulf as what our children need are more WELL INFORMED medical and other staff.

Also I feel it is unfair to suggest that because the companies offering treatment make 'profit', how on earth could they operate if they did not. In terms of clinical time and resources they charge a great deal less than our local paediatrician does, thats for sure.

Oh and although it probably makes not a jot of difference, I also work in the NHS and so (unfortuantely) have first hand knowledge of how service provision etc operates......................

ok.....

firstly those four papers are only three, as two are the same paper.

Secondly, those are abstracts, not the whole paper, so I can't read the details of the studies, just what the authors want to say in their summary.

Paper 1: Teichgraber et al: Not a randomised study. What were the inclusion criteria for each treatment group? Abstract does not mention results for repositioning group. Conclusion is that helmet therapy is better for one type of plagicephaly over another, NOT that helmet treatment is better than positioning.

Paper 2:Bruner et al: Only looks at helmet treatment. Measurements done by CT...that would NEVER get past an ethics committee in the UK. Using X-rays to do measurements, when there is no evidence that "neglect" of plagiocephaly does harm is NEGLIGENT- radiation has risks. If there was an indication to do a CT scan, then the plagiocephaly must have been severe enough for there to be a worry that this was craniosynostosis- so not a good cross-section of cases.

Paper 3: Loveday et al: "Random sample" not "randomised consecutive sample", the difference is important. This study showed NO significant difference between the two study groups- helmet and positioning- in terms of outcome; in fact, repositioning was slightly better. Helmets seem to work faster, but if the final outcomes were the same, that is not an argument for the NHS to fund it.

You haven't convinced me yet, I'm afraid.

There are many neurosurgeons and maxillofacial surgeons in the UK who have looked into this in some depth. If there was a good case for helmet treatment it WOULD be done on the NHS.

And, of course it is relevant that the companies who make these things are driving the use of them. Most NHS DGHs have either their own orthotist or an affiliation with an orthotic company who are quite capable of making them at a FRACTION of the cost of these private companies. I know that the orthotist at Yorkhill Hospital in Glasgow has made a few. Compared to the cost of other orthotics, I would imagine that each custom made helmet costs at most £200, not £2000. So even if each child required several helmets, that is still a hefty profit, that the NHS can not afford to pay.

I would be interested to know if any private health insurance companies in the UK fund these helmets; I suspect not, as there is no evidence that helmet therapy for most babies is no better than a wait and see approach.

Most doctors want to do the best for their patients, and DO take the time to investigate new treatments. If there was a need, the NHS would be paying, I assure you. I have managed to introduce a relatively new treatment in the last 8 years, by being able to demonstrate that this new treatment is far superior to an old one.

sorry,"there is no evidence that helmet therapy for most babies is better than a wait and see approach."

oh, and read mears' leaflet. the paediatricians who wrote that have spent a long time reading the current literature before producing it. I know them, and the local paediatric neurosurgeon, who deals with the more severe cases.

and I've just quickly looked up advice on plagiocephaly from several children's hospitals in the US. NONE of them advocate band therapy as a first line treatment, but as a second line treatment if repositioning has failed.

None claim that there are any long term sequelae of not treating it, all state that it is a cosmetic problem.

We do also have to bear in mind that doctors in the US, like some other countries, are paid for treating patients, and not for NOT treating them, so there will inevitably be some bias there. UK doctors are paid whether they treat or not, so have no financial stake in whether a patient gets treated or not.

Most American doctors I know are honourable people, and wouldn't treat just to get paid, but if a patient is sitting in front of you wanting treatment, and they have the means to pay, and they are likely to visit your colleagues if you don't offer treatment, and get it anyway, and the treatment has negligible risks, so you're not likely to get sued as there's nothing to go wrong, and the patient will get better anyway, so not much chance of the treatment failing and being sued for that..... in that situation, I'd probably write the script, too!

"sorry,"there is no evidence that helmet therapy for most babies is better than a wait and see approach." "

That is 100% wrong in our case.

Our DD would not have been okay without the helmet, £2500 well spent for us.

Doincognito,

all these papers are available through ATHENS and most of the other databases (medline/cinahl???) which I assume you will have access to if you work at senior level in the NHS.

There are many other pieces of research which I came across when I was looking into this with regard to my son and most seem to conclude that helmet therapy IS statistically superior to a wait and see approach or repositioning, amd in any case active repositioning is only effective before approx 4 months which is far to late for most children as their parents will have been fobbed off for months and not offered any intervention whatsoever.

It is ethically very difficult to undertake a randomised controlled trial for patients with plagiocephaly, firstly in as much as how do you ethically decide NOT to offer a treatment which might help. Who is going to want their child to enter the control group?
The randomised, double blind study will always be the gold standard (until someone comes up with something better) but it will never be fully applicable to this group or patients, there are too many unknown/ uncontrollable variables. That doesnt mean that people should not try to undertake the best research they can, as long as they are open and honest about the sort methodology they have used.

#At least one private clinis in the UK is actively offering to re-scan thre children whose parents decide NOT to scan them at age 2 to try to collate some comparable data.

No one is saying helmet therapy should be a first line treatment so I am not sure what point you are making on this issue, helmet therapy is only recommended once repositioning has been tried up to four months of age (problem is you are not likely to be lucky enough to encounter an NHS clinician who will give you info about repositioning)

Thr first study does not say that helmet therapy is better for one type of plagiocephaly over another it is saying it works better for pagiocephaly over bradycephaly, the two conditions are not interchangeable.

With regard to the study which used CT scanning, firstly, one CT scan would not constitute a radiation risk (at least that is what I was told when I last had one).
Secondly, I have recently worked in a clinical trials department and one CT scan would not be prohibited even in a healthy subject, and these children as you rightly say seem to have been scanned to exclude a much more serious condition.Mind you that may have been more to do with the cautiousness/lack of experience of the individual clinicians involved (ie not being able to exclude craniosyntosis on examination alone) rather than these cases being more 'severe'. Even if they are at the 'severe end of the spectrum this could still be useful research for people whose children do have 'sever' conditions.

Also, if you know a local paediatric neurosurgeon who 'deals with the more severe cases' then you are in effect saying that some 'cases' need 'dealing with'.

For your information, some uk insurance companies will fund for clinician time but most do not pay for the actual helmet, I understand this is true of all orthosis and prosthesis and I would imagine it is a standard exclusion.

Sorry I am being rather pedantic here but it can get very wearing doing battle with clinicians who are not aware of this condition and seem more interested on defending their own position (of not being able to offer treatment) rather than of dealing with parents and their children in a sensitive and holistic way.

How many times does it have to be pointed out that nothing is merely a cosmetic condition, look at the world we live in for gods sakes!!!!

People can and do get 'cosmetic' problems treated on the NHS, ear pinning, rhinoplasy and breast enlargement to name a few, and we all have personal opinions on this which are more to do with our own values and beliefs than anything.

There is such a narrow window of opportunity with this condition and if poeple miss it you are left with no other options to persue.

I have seem parents post on other boards about their older children who are suffering the consequences of having severe brady/plagiocephaly and they have been advised that the only option left is CRANIAL SURGERY!!!!! No thanks!!

There are also forums for adults with this condition, maybe you should have a look at some of these before you decide the NHS should not be offering treatment.

ok....

yes, I know that all these papers are available on Athens. It was nearly 10 o'clock last night when I looked at those links, and I have to draw the line somewhere.

I am not disagreeing that helmet therapy may be superior in terms of speed of effect on cranial shape, but you haven't yet proved that there are long-term health problems resulting from plagiocephaly. It is not necessary to treat a problem that doesn't exist, and children who don't or wwill not have a problemshould not be treated just in case they might. "Active" repositioning is effective before the 4 month stage, because after that age a child becomes more mobile and can reposition themselves; they roll around, sit up, start to crawl, so the head isn't under pressure for such long periods. Remodelling happens more slowly in older children, but it still happens.

Of course it is very difficult to do a randomised controlled study in such a group of patients. Not ethically, but practically. If the parents have saught help for a perceived problem, no matter how good the design of the study, they are less likely to agree to be included in a study if they think that their child may not be treated. It is perfectly ethical to elect not to treat a group, when the natural history of a condition is that it improves anyway. Another problem is that it is virtually impossible to measure compliance with non-treatment. If a child is left in a bouncy chair for hours, or a car seat, who is to know? The lack of response may be due to a failure to comply, rather than a failure of the technique.

The implication of many posts I have seen in the last couple of years on this subject is, "my child has a flat/ squint head, should I get a helmet? Why isn't this treatment available on the NHS?" Well, treatment/ advice is available on the NHS, and has been for years. There has been a lot of publicity in recent years, and so many more people are aware/ worried by it, but plagio/ brachycephaly is not a new entity, and there are NOT loads of children/ young adults out there with horribly deformed heads and difficulty with vision or teeth. There just aren't.

The first study says that helmet therapy is better for plagiocephaly rather than brachycephaly. We are talking semantics here. What it doesn't say is that helmet therapy is better than repositioning. It might do in the text, I don't know until I've read it, but if the results showed that, I would expect to see it mentioned in the abstract.

Back later

Doc incognito
I am not disareeing with all your points and it isn't helpful to argue back and forth about semantics.

However I still think that as a whole the NHS doesnt really adress this issue in an effective way, i am talking from personal experience here and i think you have to have some personal experience with a loved one to understand all sides of this arguement.

I agree whole heartedly that repositioning may work well in younger babies, but you have to be given the info in the first place, and be able to follow it through, and so many things can influence how willing and able people are to do this. I tried this with my DS as was terrified initially of his having to get a helmet. Believe me my constant efforts to 'reposition' him day and night were more upsetting to him than the helmet have ever been, not to mention ineffective as he IMMEDIATELY went back to his preferred position. In the end the helmet was the only option left.

I also agree that you do not see 'hundreds' of adults with 'deformed' heads but the BTS campaign has only been going about 10 or 15 years hasnt it? And like I said there are forums for adults who have this condition and I know of one lad of about ten who has severe Bradycephaly and he DOES get teased, mercilessly in fact.

I won't say any more on this subject as only posted originally to bump the topic up to help others who may be reading and share my story.

You are entitiled to your views but please check out the forums for adults as they may give a different perspective (or maybe not!)

Enough said

It is not a cosmetic problem..........

I dont think anybody in this discussion has actually looked into the Sleepcurve mattress design.

Plagiocephaly/ brachycephaly is caused from babies lying for long periods of time on flat surfaces (natuaral for neonates).

The sleepcurve mattress has a 'negative' pillow, a curve in with your babys head lies. This automatically takes all the pressure off the back of the skull, opens up the airways to enabling them to breathe efficiently, also allowing them maximum rotation of the neck to aid spinal development. It is a very natural position for a baby to lie in and if all babies used the sleepcurve mattress from birth there would be no arguement here and this discussion would not even take place. No-one would be forking out £2000 for starband treatment.

The mattress was designed by a paediatric cranial osteopath and DOES actually PREVENT flat head syndrome very successfully.

People just need to know it exists!

Great post, Torgrosset and thank you for drawing attention to this mostly avoidable condition.
Our twins had it, DT1 had a flat area at the back of his head but DT2's head had a slightly diagonally 'squished'look, if you will. DH was poo-pooing my worries for some time, telling me that he'll grow out of it etc - just as the GP and HV did.
Moi, however, is a stubborn beast and after extensive and maddeningly through research, decided to take DT1 to see the specialist in London.
The asymmetry was close to 2cm and by that time very obvious. He's ears were almost diagonal and he was slightly cross-eyed because the right side of his forehead was slightly protruding, for lack of better description.
We decided to go for the helmet therapy, the helmet was fitted when DT2 turned 4months old and honestly, he didn't notice it at all. Took to his little gladiator kit like fish to water. 4,5 months later, he had a gorgeous little round head and the helmet was off. It did work and it's the best thing we did, so very happy with the results!
DT1 however, still has his flat area on the back of his head, it hasn't changed and I don't think it ever will.
Luckily it isn't noticeable. We were ready to get him the helmet at the same time as his brother but the consultant advised against it, he said that DT1's asymmetry was a minor one and will become even less noticeable as he grows older, hence no need for the helmet.
I haven't read the thread past pg1, just wanted to share our experience with the plagiocephaly. Apart from creating health problems (misaligned jaw, headaches etc)later in life for DT2, we didn't want him to be picked on at school, kids can be so cruel.....

Don't know whether this has already been mentioned but there is a special type of mattress you can buy which claims to prevent flat head syndrome. I bought the moses basket mattress for my DS and we never had any problems. Here is the link www.sleepcurve.com

I fail to understand how reposition will work when it took time to get a flat head in the first place. if the same process applies, only the elmet will be appropriate
cur

When both my DS's were babies they both had it, but I was more concerned with DS 2. Asked HV and she said it was nothing to worry about, so I didn't. But DS has quite a flat head at the back and it has now become a little joke in our house. He is not bothered, tbh I'm not. He is very intelligent young man and does not get called names as school because of it. I should imagine with a girl, it is less of a problem because they tend to have a lot more hair.

I'm sure you have got a lot of flaming from the usual whingeing ignoramuses; pay no heed, they don't matter an iota.

Good luck with your campaign, hope more parents pay attention and save their children from a lifetime of misery.

Rollmops, my understanding is that most posters have not been whingeing ignoramuses: they have just been trying to point out that there are different levels of plagiocephaly, caused by different things and that was is a must for one baby may not be necessary for another baby.

My dd was very noticeably flatheaded as a baby and it did sort itself out as soon as she started sitting up. My experience is neither more or less valid than yours- just different.

Otoh lots of flat-footed toddlers of my acquaintance developed normal gait as they grew up, whereas mine needed orthotics. Doesn't mean that the parents who took a wait and see approach, and whose children are now walking normally, were whingeing ignoramuses- they were right about their children.