parents with young babies do you know about plagiocephaly?

[o8sp]

my 6 month old daughter has severe plagiocephaly (flat head syndrome) and we have had to buy a custom made helmet that she wears for 23 hours a day. It cost �1850 because the nhs say that hair growth will cover it.

anyway the point of this is please make sure your babies get plenty of tummy time as health visitors are not doing their job abd telling parents about this. i saw mine for the first time since we got the helmet and she said oh what is this for and then walked off. for further information visit http://groups.msn.com/plagioUK/plagiouk.msnw

[redcrx]

Can i just say well dont you for bringing it to peoples attention.

I find it appaling that the NHS isnt funding the helmets for children when a bit of training for health visitors may mean that the incidences of this are reduced dramatically.

I hope that you daughter wont need to wear the helmet for too long

[o8sp]

thanks redcrx. i am on a mission to make sure that other people can avoid this if they can. i am just trying to find out who to complain to about the health visitor and make sure that this information is given in the future. i have had a local plastic surgeon slate me in th e local paper as we appeared in it to raise awareness and so i have just sent my reply to him as well.

i'll get off the soapbox now!

[redcrx]

There is a woman on an ivillage support board who went through this http://www.thecourier.co.uk/output/2006/01/26/newsstory7965125t0.asp

I shall see if i can find out more for you

[mimififi]

maybe it depends on your area. My friends littlun had such severe plagiocephaly that it was deemed a concern as it was appearing to intefere with the development of her eye sockets and thus her vision. She had her corrective treatment funded fully by the NHS. The interesting things was that as the cephaly is measured in mm (and admittedly my friends baby did have copious amounts of hair) it was barely noticable in everyday life and only noticeable from certain angles when her hair was wet. Maybe the problem for the NHS is spending a large amount of money on every child eith this condition when in the large majority of children it does not pose any actual health risks and is only a cosmetic issue. especially when noone has a perfect head and it is covered with hair. I guess the problem for the NHS is deciding who needs the treatment and not. I could see the situation when everyparent with a child with a slight/mild cephaly wants the treatment and this would seriously stretch an already stretched budget.

However, this doesn't help you and I can imagine what a trying time for you this must have been. And you are of course right: Prevention is better than cure and HV should be more proactive in telling parents that it is not a good thing to leave babies on their backs all day and night long that they need to change the positions, or sit babies more upright for periods of the day.

Europe spends far more on preventative treatments for alsorts of illnesses, its a shame we can't learn more from them. It would leave NHS budgets free-er to treat more efficiently chidlren with serious life threatening illnesses if others were prevented.

[alijangra]

I agree its a disgrace that the health visitor did not appear to have any knowledge of this condition or its treatment.

Just a thought, but dont you think the helmet manufacturers are capitalising on the fact the nhs do not treat the condition? I cant fathom how they can justify charging nearly 2k for it.

[o8sp]

the breakdown on the invoice was �850 for scan, helmet (made in USA) and cleaning alcohol. �1000 for appointments regardless of how many or how long you take. I suppose that you could say that they are cashing in but that is inevitable where the number of suppliers for anything is so limited.