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Helmet Therapy - Any ideas

(12 Posts)
ellac Tue 07-Jul-09 21:53:03

Hi.My twins need helmet therapy to help with their plagiocephaly. Have been told it is not available on the NHS, because it is 'cosmetic!!'(So teeth braces and eye squints oh and boob jobs aren't!). anyway, before I get too bitter and twisted about it, has anyone managed to get this through the RAF?have already tried the rafbf and the british legion.have said no!

likessleep Wed 08-Jul-09 15:21:10

we haven't got any connections with the raf, but i thought i'd post to say that my ds had a helmet last year.
there are some fab websites with other mums who are also going through the band experience at the same time, which i found an enormous source of support. (i think, relying from memory!) and another, which i can't remember the name of.
good luck - it can be tough at the beginning of treatment, but they get used to their hats so quickly. in many ways, it's tougher on the mums and dads.
tea tree shampoo works really well at getting rid of the smell.
take care smile

muddleduck Wed 08-Jul-09 15:34:10

Can I hijack and ask you both how/when you decided to do this? DS1 had a pretty mild version of this but nobody ever mentioned doing anything about it and we were told it would go away with time. He is now 4 and it is unnoticeable to anyone but me. I'm really interested to know why your experience has been so different - it is just that it is more sever in your dc?

likessleep Wed 08-Jul-09 15:48:43

Hi Muddleduck,
My DS was at 9mm, so in the moderate category. TBH, we were told by the clinic that it was borderline case, but I looked it up a lot online and after a lot of stress and indecision, we decided that it was the right decision for us. Our families disagreed with us, but supported us through it. It was a really tough decision. I think the NHS have a pretty crap attitude towards it - his hair will cover it, it will grow out etc etc. so it isn't something that is recognised in the UK. We got nowhere with Drs and HVs (the latter actually said to me "you'll still love him" which angered me so much, that it made me look elsewhere for information and advice, as I just thought what a crap response that was). Some districts do provide the helmets on the NHS (one in Bristol does I think), it's because it is 'cosmetic' (even though severe cases can lead to other problems with eyesight and jaw problems etc). sorry, it's something that angers me so much, that it isn't recognised and that Drs and HVs aren't trained to give preventative information on repositioning, tummy time etc.
Rant over, sorry blush
PS whether or not you'd gone for a helmet, you'll always see a slight assymetry on your own ds. i can still see on ds (he finished treatment at 3mm assymetry), but very slight now. it has also improved with time as well.

muddleduck Wed 08-Jul-09 15:51:46

ds1 was never measured - how do they do this?

likessleep Wed 08-Jul-09 16:06:30

they measure at the band clinics (like london orthotic consultancy, where we went). they measure with calipers, so that they measure the two diagonals and therefore work out the difference between front right and back left points, and front left with back right points.

drs don't measure them. it's just the helmet clinics.

we went to
not sure what that helps with posting that up, but anyway.

muddleduck Wed 08-Jul-09 16:17:54

So how did you get to the point of going to the clinic. I'm just interested because it never crossed my mind to do anything about this (and I don't regret that at all), but I always find in interesting when other people make different choices to me (not that I knew we were making a choice IYSWIM).

likessleep Wed 08-Jul-09 16:24:26

because the flatness bothered me, got nowhere with the hv and so i googled it online. i then read other peoples experiences and found a list of clinics and their sites and went for a no-obligation consultation.

muddleduck Wed 08-Jul-09 16:31:58

thanks for taking the time to 'talk' to me.

madwomanintheattic Wed 08-Jul-09 16:41:33

i think you will have trouble to be honest, whilst it is at a 'cosmetic' level. if the plagio increases to the point of affecting health then i'm guessing the nhs will offer, or a charity will be more receptive. in the meantime i assume you are getting advice re positioning etc?

(and i know you are frustrated by that - but teeth/squints and boob jobs usually do have other implications as well as cosmetic - otherwise they get turned down too lol, although i know that's not what you want to hear.)

if i was keen on it, i'd probably look at self-funding through a loan (not that i have any idea how much it costs grin).

there's quite a lot of pressure on charities, particularly those associated with the military (and particularly at the moment), and it really is a case of proving your circumstance is worse than someone elses.

i do know a little girl who was given helmet therapy on the nhs, and an awful lot of other interventions, but hers was a very severe case.

muddleduck Wed 08-Jul-09 16:46:17

FWIW - as mentioned above DS1 had this and it was really really noticeable when he was a baby but now he looks completely fine. DH was amazed when I mentioned that I can still see the assymetry as in his view it has completely gone.

EachPeachPearMum Wed 08-Jul-09 16:46:39

My dd had severe plagio, and we used a helmet to correct it- she was 2.4mm I think (long time ago!)

Often twins have it because they have been squished together in the womb- the worst case I saw was a little girl who was completely squiffy in her upper half- her rib cage too! (though I don't think theres anything you can do about that)

ellac- have you been repositioning? I have found it very successful for my DS who is now 5mo- he was plagio within 2 weeks of birth- heavy lad- and we have used a sleep positioner very successfully- he now is almost perfectly symmetrical- and at £22 it is a vast amount cheaper than 2 helmets. How old are your twins?

If you consult Dr Blecher, he will suggest repositioning in most cases before you go down the route of helmets, but don't know what starband people are like.

Muddleduck- mild plagio can become unnoticeable when the child is older, but more severe cases do not. Having had a child who required treatment, I am very aware of the shape of people's head, and frequently notice older children and even adults who have plagio or brachycephaly (flat at the back).

And as Likessleep says- I can still see where dd's flat bit was, even though to anyone else it would not be possible to see.

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