Plagiocephaly - any experience of this?

[arabicabean]

Hi I'm new to MN and a first time mum. My 5 month baby has developed plagiocephaly. He is being seen by a cons paediatrician and has just started weekly paed physiotherapy. (A slight preference to turn his head one way caused the problem).

We have 1 month to resolve this by all the usual means (e.g repositioning, Goi Goi pillow etc). If this does not work he will need cranial banding (helmet). I want to start the helmet treatment at a maximum age of 6 months.

Has anyone been in a similar position of diagnosis at ~5 months? If so, what was the outcome?

(Will go back to orthosis clinic to check asymmetry and cranial index after 1 month (have starting values) and discuss helmet treatment with cons).

My son has a severe case. The whole back of his head is comletely flat. It became apparent at about 2-3months. He is now 11 months. I took him to gp about something else, and he commented on the size and shape of ds's head at the sides, but it's just where the bones are pushed to the sides. Anyway, ds was refereed to paed, for reflux and he looked at his head. He confirmed plagio, but said it was purely cosmetic and has no affect on development. DS has recieved no treatment for this.

Thanks for your responses - they are much appreciated.

littleboyblue - What is the shape of your son's head like now?

stringerbell - I will have a go at sending a pm (need to read faq). I am particularly interested in the need for a neurosurgeon as this has not been raised for my baby.

Well I was talking to my HV about it and she said around half the babies she sees have plagio. She is not allowed to refer to a paed for the condition (neither will the GP, but you can insist on it - am in Surrey). She has to give the advice that mobility and hair growth will resolve the problem.
The physio said that she also sees a lot of babies with plagio, but she is treating them for other conditions on the NHS.

I don't know what the basis is for the advice that it is purely cosmetic and time will bring about a normal shape. I will ask the cons at our next meeting what the state of the current literature is on plagio.

Anyway it's lots of playtime involving sitting and rolling for us. I do find the prospect of the helmet very distressing (I 've yet to see a baby wearing one in RL), but he will probably be fine with it, it's just me who won't be.

DS got a diagnosis at 4 1/2m and the gp sent us to an osteopath rather than referring us to a paed. (could be that the wait was so long or nhs policy). Turns out he had a shoulder problem which also meant he couldn't lift his head at all when on his tummy or turn properly (still at 9m has rolled about 3 times). The plagio looked very severe but the osteopath has made a big difference, although his face is still a bit uneven. (So no helmet needed in this case.)

Hi arabicabean,

My DS has plagiocephaly on one side, it became very obvious early on as he has a preference for turning his head to one side. The GP and HV told me it was normal for babies to have a preference for one side. Anyway, I took him to a paediatrician at 4 months old while I was in Singapore visiting my parents (I couldn't get an appointment to see a paediatrician here till end of July!) and he diagnosed torticollis and referred him to a physio. DS was seeing a cranial osteopath here but it wasn't really making a difference. The physiotherapist showed me a series of exercises to do on DS 3 times a day and in 2 weeks, there was a marked difference! She also said that I should have seen a physio much earlier on as at 4 months, their neck muscles are fairly developed and it was harder to 'untighten' the muscles. I'm still doing the exercises (DS hates it understandably but it only take a couple of minutes each time) and hoping to resolve this quickly. I found that the goi goi pillow does help as well. His flat head has also improved lots. I also started letting him sleep on his side The physio said that was a good idea. I'm confident DS' condition will improve with time. GL!

Ax

Hey there arabicabean
DS's head is still very flat. There is a small lump at the bottom at the back, not sure if that's it starting to shape back to normal, but he has lots of thick hair so is barely noticeable

Arabicabean,

Just wanted to say my friend's little dd (now 18mts and has come off I think) had a helmet for flat head for about 6 months which she did privately. When I have seen her, she has been coping with helmet absolutely fine - she had to have it on for 23hrs per day, but was eating, sleeping, playing etc and didn't seem bothered. However, people (strangers) had made nasty comments to mother, and given odd looks etc. Aren't people horrible. Anyway, just wanted to reassure you that your lo will be fine with helmet if/when you proceed with it.

Thanks for all your responses.

Being a first time mum with no experience of babies, I thought it was quite normal to have a slightly flat head at the back. I also read on the internet that babies often had a preference for one side, so nothing untoward there. It was only when the flatness developed a slight angle to it, that I realised that something was not right and took him to see the paed immediately (an x-ray was done to rule out premature fusing of the bones and paed physio was arranged). None of the health professionals had ever commented on it (saw GP for a few minor aliments, HV visits on a regular basis).

If I had been aware of the consequences of looking in one direction or fully appreciated the problems associated with babies on their backs, I feel I would not be in this position. From what I read on the internet it seems entirely preventable. If my baby ends up with the helmet, I will be trying to rectify a situation that should never have arisen, and this will always cause me guilt.

Because it is such a common problem, I feel that the red book should have photos of plagio head shapes and how to avoid it in the first place.

I have some experience of this.

Firstly, plagio = asymmetry, brachio = flat head.

I would really try to reposition your DS by putting him to sleep on the opposite side, put him on his tummy to play, buy a bumbo so he can sit (if he can't sit unaided yet) and see a cranial osteopath, carry on with physio.

DS (6) has a flat head at back (brachio) and slight asymmetry (plagio). He sees a cranial osteopath - really recommend it and am quite cynical about this stuff. You can't really tell unless his hair is wet so from a cosmetic pov not a problem but it can lead to all sorts of other problems. My DS is an example of this but good news is you can correct it, even at his age.

DD2 had a helmet when she was about 8 months for mild plagio/brachio. Basically I didn't want to take the risk of her ending up like DS. We went to a private clinic. I wouldn't recommend it. I think it's a complete rip-off unless your child is severe and older (at upper range of the limit for having the helmet). They are uncomfortable, cause rubbing, red marks etc, are a pita imo and chances are it will improve on it's own if you do all the radical repositioning stuff I listed above. DD2's head is fine now (I only lasted 3 months with the helmet). However, we have a genetic disposition to flatter heads at back on DH's side (meditterranean). Take a look at people around you - I notice that many eastern europeans in particular have quite flat though symmetrical heads. You become an 'expert' at noticing these things when you've been through it like me .

The other thing that can help (although it's more of a preventative thing) is a sleepcurve mattress

My son was recently operated on for craniosyntosis. If you are concerned about the deformation, an xray will confirm that the sutures are not fused and it is a 'simple plagiocephaly'. In France babies presenting with plagiocephaly are always x rayed to rule out structural problems.

stringerbell - Thanks for the links, it was very kind of you. Can I ask how long the whole referral procedure took, i.e from you first noticing a problem to the day of the casting? I will discuss the Franchay method with our paed. I will probably go with the company in Kingston as this is nearer to me (have to visit every 2-4 weeks for check-ups), but I will be speaking to the paed about this helmet as well. As you know the results are achieved in slightly different ways, and I want him to compare the Franchay method with the commercial one.
By the way, all your children look utterly adorable. I see you visited Sienna. It's a lovely place. We stayed in Florence and drove there for the day.

Castlesintheair - Thanks for your experience. Yes plagio is often a generic term used to cover all shapes as well a particular shape. The other shapes (I know of) are brachycephaly, dolichocephaly and scaphocephaly, so not suprisingly they are sometimes grouped together.

Already have had an x-ray done - that was the first thing that the paed arranged.

Our son had plagio, and some brachy. We were most worried about the facial asymetry and had a head band for just over 3 months. His face is not back to symetrical, his ears are very slightly asymetric and his plagio was down to 3mm but i suspect as he has grown since he has changed that measurement now. He still has some brachy but we decided not to continue as its not too bad. On the whole we were v happy.

On the cosmetic note, it is helpful to think of it as not affecting the brain, very reasuring, but not so helpful to dismiss it as not a problem. We were worried that our son would have looked lopsided, not been able to wear glasses or sunglasses straight, not been able to wear a cycle helmet or possible even safety helmets. How you look is very important, we were worried that he would be discriminated against if he looked very odd. Yes, cosmetic, but still important.

We did a lot of repositioning and tummy time, but it wasnt making any difference, his plagio was rapidly getting worse. We were so relieved that the helmet stopped it, and thrilled that it improved it.

It was a hard decision to make, but he was fine with his helmet.

hope that summary of our experience helps some

bangs head against wall... must proof read!

His face is now back to symetrical he looks great lol

IMO the shape of the head doesn't really matter - but facial asymmetry is not great is it?

Re-positioning and advice from the paed physio is the best route if there is no facial asymmetry.

Not sure about helmets - seem a bit drastic for flat heads but maybe not for asymmetrical faces?

Same here, shape matters, to me at least. I will not have him teased about it at school (children can be so cruel).
And how you look is important in life. Fortunately I can do my best to rectify the problem.

Hi - my ds (6m) has plagio on one side, just from a preference for sleeping on one side rather than a muscle problem. Like you arabicabean I really wish I'd known about it sooner, my hv never said anything and I only really started to notice at 4m when we got a referral to a physio.

2m later I do think repositioning has made a bit of a difference as he is starting to look much less 'cone-like' ! We decided to hold off on a helmet for a few months to see what happened and I don't think we will do it now. Fingers crossed it was the right decision! Good luck with your little one.

One thing the physio told us about repositioning which I didn't read online or in leaflets was to position him completely on his other side (e.g. turn him totally on the other side during naps and playing) rather than just keep him off his head with sitting/ bumbo seat/ baby carrier etc. to help even it out even more.

All i meant was that the evidence I have looked at says normally all is well by 2 whether you intervene or not. So cycle helmets and teasing at school would not be an issue.

www.gosh.nhs.uk/factsheets/families/F040171/index.html#diagnosed

This means that for mild cases, positional plagiocephaly may have corrected itself by the time a child is a year or so old. Even more severe cases improve with time (and of course hair covers the back of the head) but even for them, some slow improvement over months and even years is to be expected, although a degree of flattening usually remains. However, it is very unusual for this to be enough to provoke attention (teasing, for example) when the child is off to school.

And those needing intervention are often the extreme cases. And the facial asymmetry is the clue?