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).

I might have thought differently about my son's plagio if it had affected his face.
Do the helmets not have a negative affect on head control? If they have to wear them for 23 hours a day, how are they at holding thier heads up for the other hour?
I only ask because I'm a bit curious as saw one a few months ago on a small baby and didn't know what it was till I read M&B mag the next day.

Maybe the NHS cant afford to pay for them so they encorage the view that it gets better on its own, as it does in some cases. However, a bit of research into Cranio forums looking for adult plagio is sobering. By then it is too late to do anything.

DS's face was getting quite odd, he had one eye smaller than the other and one side of his forhead was larger.

His helmet was very light and he had no problem holding his head up and sitting and learning to crawl while wearing it, and I didnt notice any difference when we took it off. They can get a bit whiffy tho. The bit he didnt like was the long car journey up to kingston to get it checked!

I have put some photos on my profile

My son developed moderate plagio as a result of torticollis and preference for turning to one side. We got a private referral (to speed things up) at 3.5 months to a paediatrician. I asked her to refer us for physio - initially she was just going to arrange for his hips to be checked and then ask us to go back but I didn't want to lose valuable time waiting to start physio. The paediatric physio was excellent in helping with repositioning - much better at helping with the torticollis than cranial oesteopathy which we had tried initially before our paed referral. Repositioning did help but in the end we also decided to put him in a helmet from a private clinic at 9 months old. By then his plagio wasn't bad, I think he could have lived with it but we were worried about glasses, helmets etc being a bad fit when he was older. We were sure by then that we couldn't achieve more with repositioning as the scull bones start to harden and they are too mobile to allow you to force them to lie in a particular position to even things out!

He's been in his helmet for two weeks and seems happy so far and sleeps well in it. I think we have had a few stares but I've not been bothered by it - most people pay no attention or only look briefly.

I think the private helmet companies rely on the babies' head growing into the helmet just as Frenchay does rather than on applying pressure as someone here suggested. The private helmet providers have different methods of creating the mould for the helmet - e.g. a quick laser scan or 3d photography. I believe Frenchay do casting under sedation. Some people can manage to get their insurance company or PCT to pay for a helmet or some of the consultations from a private helmet provider if you can't get treatment from Frenchay.

Twofir ?Great that the helmet worked for your baby. Small world - I too may be having the treatment at Kingston.

LooseyC - I see you share my angst at having to deal with a problem that in our cases, should never have arisen. Doesn?t it make you feel frustrated and angry that it could have been avoided altogether. I do hope that your little one is okay.

Gagarin ? I haven seen the GOSH factsheet.. The problem I have with this is there is no underlying research (in the U.K) to support their recommendations. I spoke with the chap at Frenchay who makes the helmets and he confirmed this. Not only that, all their requests for funding for such research has been turned down. I may be a cynic, but there are huge financial implications for the government if the conclusion is anything but ?don?t worry time will sort it out?. As for your opinion about helmets, i.e. ?Not sure about helmets - seem a bit drastic for flat heads but maybe not for asymmetrical faces??, I think that is a very personal matter for the parents of the baby to decide. Those of us in this unfortunate position, I am sure we have given the matter a great deal of consideration whether we decided on the helmet route or not.

MGMidget ? The chap at Frenchay told me he has had parents in tears over the lack of funding from their PCT. Some have had to raise loans to afford it via the private sector. A complete shortfall between demand and supply on the NHS.

Thanks for sharing your experiences. I?m more reassured now that should the helmet need not be the ordeal I originally feared. I was so worried that my lovely happy smiling baby would be miserable all the time wearing it.