Preferential head turn and flat head syndrome

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Anyone's DC have/had this? I know it's more common in multiples. My 9 week old girls are both affected and I'm looking for tips on how to treat it and reassurance that the plagiocephaly will improve! The things we've been doing so far don't seem to be having much effect (we re-position them but they quickly turn back again; we do tummy time, but they make a big fuss; etc).

In terms of treatment, it seems there's not much the NHS can do (unless the torticollis eventually requires surgery). They say helmet therapy isn't effective but I've seen photos of babies treated with it in the US and it does look like it makes a difference? We've got private health cover through DH's work - no idea whether it would even be covered, but just wondering if anyone has been down that route and knows if it's worth pursuing.

No, helmets aren’t effective. Have you been referred for physio yet? If not I’d ask your hv or paediatrician for that, they can give you exercises to loosen the muscles to help them turn their heads & also special pillows etc (that are a bit like cheap breast implants ). A lot of it is time though & also realising that if we were all bald we’d all have funny shaped heads!

The baby pillows for flat heads , you can get them on eBay. Has helped my DS

Thanks for the replies! No, we haven't been referred for physio yet - it was hard enough getting the health visitor to do the paediatrician referral (a begrudging, "Well I'll do it, but I don't know what you think they'll be able to do!") Will definitely look into the pillows though. No problem if their heads aren't the perfect shape (I'm sure their hair will do a lot to mask it when it grows) but it's already pretty severe and affecting the facial symmetry and ear alignment of DT2

I had twins. 1 had serious flat head and torticollis. We got physio on her neck which helped and got better. I kept being told by various nhs professionals that helmets were for rich people. I decided to go and seek my own opinion. She was considered in the severe bracket and so I got her a helmet. It's the best thing I did. Within a few months her head shape was noticibly better. Go and seek your own advice. I don't regret it at all.

BernardsarenotalwaysSaints how do you know they are not effective? In my daughter's case it was very effective. If I had listened to people like you and so called NHS experts I would have a little girl with a very odd shaped head that hair wouldn't have masked. She'd have to suffer with that deformity for life. I agree mild cases may decide not to and hair will cover it but that's not always true.

They are still really young. I left it a bit late but had an NHS referral to a physio and concurrently we had him treated by an osteopath (some specialise in infants) about 8 sessions later she was happy with his neck movement. We also got a helmet because we couldn't live with the what-ifs of not doing so. By the time we actually got an NHS physio appt he was in his helmet, she gave extra exercises we could do and by the end of 3 appts she was happy with his neck movement.
Timescale is a bit hazy now but probably 5months to 9/10 months.
I'd definitely recommend the osteopath route initially. Good luck.

Just an update... we bought a Mimos pillow a couple of weeks ago - just one between the DTs to see if it did anything to improve the plagiocephaly. I think it is having a positive effect on their head shape, but it's most definitely helping the torticollis, which I didn't expect! Before the pillow, I didn't think the exercises I'd been doing were really achieving anything, but I now think they actually did help loosen the muscles but my girls were still in the habit of turning their heads. After just a few days using the pillow (which kept their necks relatively straight) they began to spontaneously lie with their heads flat or to the other side, which we're really pleased about. We've now ordered a second one so they can have one each, instead of taking turns.

@Mrswalliams1 - Sadly, I keep reading stories of people who were fobbed off by the NHS telling them it will correct itself and now regret not taking action It's awful how dismissive most medical professionals are of this. I'm keeping an open mind about the helmets for now - hoping the pillows will be effective enough not to need them but we'll see how things go in the next couple of months.

@Streaky17 - That's interesting - do you mean you saw the osteopath privately? If so, do you remember how expensive it was?

Yes I saw a private osteopath it was about £35 ish a session so quite expensive but it definitely worked for us.

Just coming back to update...

DTs are now 4.5 months. DT1 seems to have the full range of movement in her neck, but her head is still quite mis-shapen - she's still sleeping in one particular position, but now it's because it's clearly only comfortable to sleep on the flat spot that's formed on one side of the back of her head. However, she has enough head control to hold herself upright on my lap or in a bumbo chair, and that definitely makes a difference - her head shape is worst first thing in the morning and improves throughout the day.

DT2 doesn't quite have full movement in her neck yet but it's definitely getting there. For a long time, we were more concerned about her head that DT1s, but a few weeks ago it suddenly improved massively. Still some way to go, but I'm hopeful it will eventually right itself.

The referral never actually came through and we were due to go back to the GP this week to push some more, but have cancelled the appointment due to the coronavirus situation. We're self-isolating due to medical conditions, but I can't see us being able to access non-essential treatment in the current climate anyway Will continue doing our best to manage it ourselves.