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Original poster

4 YEAR old had plagiocephally (wonky head) - what can we do

44 replies

noseynoonoo · 04/01/2013 15:19

My DS has had a wonky head since he was about 2 months old. The NHS gave us incorrect advice at the time and there are times now when I could cry at the wonkiness of my son's head. When you look at his head face-on his right side is very much wider than his left.

Can someone help?

OP posts:
Pancakeflipper · 04/01/2013 15:25

Have you spoken to the Dr's again and had a referral to the hospital?

Have you considered phoning a few osteopaths ( they specialise in different things and there might be 1 who could help you?).

Original poster
noseynoonoo · 04/01/2013 15:27

We did go to various cranial osteopaths.

The GPs have just told me its OK because his hair covers it - which it clearly doesn't (and he's from a family of baldies). I am made to feel like I'm complaining because he has a few freckles.

OP posts:
Bonsoir · 04/01/2013 15:28

You need to see a paediatrician at a teaching hospital. It is shocking that your very real concerns are being dismissed this way. Ask your GP for a referral. Would you be able to pay? You will get a referral instantly if you are.

Plopsicle · 04/01/2013 15:34

DD had this when she was a baby, she is 4 now and it isn't noticeable any more.

When I looked into treatment it was only available privately, this was 4 years ago so could have changed since then. It involved them wearing a helmet made especially for them to gently manipulate the skull back into shape, I think this treatment was recommended before the age of 1 year though.

More info here www.londonorthotics.co.uk/plagiocephaly/locband.html

Original poster
noseynoonoo · 04/01/2013 15:37

My son is 4 years old so the helmet isn't applicable. Of course when I first went to the doctor is 2008 it would have been appropriate but they were unhelpful.

OP posts:
Original poster
noseynoonoo · 04/01/2013 15:38

I suppose I want to know what the options are - presumably at this point it is too late for anything anyway?

OP posts:
Plopsicle · 04/01/2013 15:45

We were told by NHS doctors that it is purely cosmetic and therefore not treated on the NHS and same as your GP, that her hair would cover it. I looked into private treatment but it was just too expensive for us.

It was very upsetting but luckily DD's did improve and it has never affected her facial features.

There doesn't seem to be much information out there for older children, I wonder if perhaps the clinics who deal with babies would know of treatments for older children? could be worth a try?

It must be so frustrating for you being fobbed off by your GP.

MistyB · 04/01/2013 15:48

Are you anywhere in the south east? The Children's Centre (more osteopathy!!) may be able to help.

Original poster
noseynoonoo · 04/01/2013 16:19

MistyB, We are in the SE and I have just spoken to The Children's Centre. It looks like the head is not correctable but there could be problems along the spine or pelvis going forward so we are going to visit them for a prognosis and then if we need more help we can get help closer to home - they even had an appointment available for Monday! So thank you MistyB!

OP posts:
Pancakeflipper · 04/01/2013 16:26

ooh well done Mistyb.

Hope it goes ok on Monday for you OP.

Bonsoir · 04/01/2013 16:28

Good luck! I am so sorry that the NHS let you down on this and hope that further disalignment / dysymmetry can be averted.

LegoAcupuncture · 04/01/2013 16:33

Ds2 has plagiocephaly. It was very noticeable as a baby, it looked like, someone had chopped half his skull off no one side.

Like yourself we were made to feel stupid when we had taken him to the GP, we did manage to get referred at 9 months. He had X-rays done and the paed we saw said they would OT recommend the star bands, that his head would even out eventually, would cover with hair etc.

He is now 7 and his head has grown out more evenly and not as noticeable now. One one side of his head there is a dip, almost as if someone has used an ice cream scoop. It's not deep, but you can feel it. On the other side of his head it sticks out and I can see it, but I don't think it is that noticeable if you don't know it is there.

Plopsicle · 04/01/2013 16:42

That clinic looks great. Good luck.

Bonsoir · 04/01/2013 16:45

Looking at French sites, it would appear that Spain is the country that can offer the best solutions for plagiocephally.

Savannahgirl · 04/01/2013 16:46

We had a similar experience with our DS who is now 11. A paediatrician totally ignored my concerns about his wonky shaped head and made me feel like a fool for daring to waste her time! I even asked about helmets and she laughed at me Shock

I pestered and pestered until we were referred to a craniofacial specialist when he was three but by the time we saw him we were told it was too late to do anything about it as his skull bones were now fused. We were devastated to say the least.

I can reassure you that now at the age of 11, his head, although still slightly misshapen has evened out a little bit. Most of the time it isn't that obvious, but when his hair his wet it shows a bit more. We can only hope that by the time he is an adult it will have grown out a bit more.

I suppose in the grand scheme of things we are very fortunate that he is otherwise healthy and happy, but I will never forgive that awful paediatrician who could have made the difference if she had taken us seriously at the timeAngry

I feel your frustration OP and although I can't offer any practical advice I hope it is a comfort to know you are not alone in feeling let down.

Bonsoir · 04/01/2013 16:51

Reading a bit more on a French forum for parents, it would appear that French paediatricians are (also) insufficiently informed about plagiocephally and don't know about the other problems that it can entail. French parents are up in arms because it is considered a cosmetic problem when it is actually not that simple.

Original poster
noseynoonoo · 07/01/2013 12:03

Off to the Children's Centre later. I am hopeful that they will tell me that it is genuinely not so bad.

OP posts:
slartybartfast · 07/01/2013 12:10

i dont think there is much that can be done after a certain age. from what i have heard

EugenesAxe · 07/01/2013 12:20

As Savannah says I think you're less likely to be able to adjust it once their bones have fused.

My son was getting it quite badly and I stopped it getting worse by using a egonomic pillow from about 2-3 months old; then his head more or less sorted itself naturally with being upright and bounding around and stuff. That's only useful if you have another child though, sorry.

EugenesAxe · 07/01/2013 12:22

ergonomic pillow. Although I like the idea of a pillow that's up it's own arse... or foam stuffing.

Jestrin · 07/01/2013 21:18

My son has plagiocephaly. He's now 13 and we weren't offered any treatment for it. As a baby/toddler you could see it but not excessively so. Now that he has a fuller head of hair you wouldn't know at all. I don't know if that will reassure you or not but I hope it might.

Original poster
noseynoonoo · 07/01/2013 23:12

Well we went today. Second question was how did I hear about them..er.. Mumsnet! I think she thought I was a nutter.

Anyway, plagiocephally confirmed. Not much can be done re: aesthetics. They did recommend a course of treatment to help loosen up his neck and this in turn will have an affect on the soft tissue in his skull and on his sacrum. They said he responded very well to his first treatment which augured well.

They said that the plagiocephally could be leading to a lack of concentration and his up/down nature. The treatment should help him 'reach his full potential'. I think I need to clarify what she meant by that. Interestingly, she and her superior were adamant that he had had a number of ear infections and this is why he had been a very slow speaker and is still not perfect - and I am shocked if this is the case since he has seen GP over speech issues and a speech therapist.

Back next week for treatment 2.

Thanks again for the advice on this. It won't cure the problem but I felt that I was listened to and that all that can be done is actually being done. I am so furious though that I have been dismissed up until now.

OP posts:
Original poster
noseynoonoo · 07/01/2013 23:14

EugenesEx We used a variety of specially designed pillows from 6 weeks. We did pretty much everything that we could do whilst the experts were very busy navel-gazing.

OP posts:
Shellywelly1973 · 07/01/2013 23:22

My ds is 4 & from about 2months it was very obvious his head was very misshapen. I listened to my GP unfortunately. I keep his hair quite long but due to the shape of his head,1 of his ears stick out.

I tried everything when he was little to mould his head. I read about the helmets when he was 2&could have cried with frustration.

I will definitely look up the link.

Rollmops · 08/01/2013 08:57

So sorry about your son. Plagiocephaly etc will sometimes self-correct, however, not always. I am afraid that at the age of 4yrs, it is too late for non invasive helmet therapy, however, do consult specialists in that regard.
Good luck.