Is it too late to do anything about DD's Flat-Head Syndrome?

[DawnAS]

My DD is coming up for 9 months old and from very early on the back of her head has been flat. When you look down on her from above, her head is heart-shaped.

She is developing fine but I'm starting to worry that it will be permanently like this.

DH keeps telling me that when her hair grows, no-one will notice it, but I'm not so sure. She already has a problem with the muscles not working for one of her eyelids which she will have to have operated on before she starts school so I'm just hoping that this isn't another thing that I need to be worried about.

She has had various GP appointments for colds/infections etc and not one has mentioned her head. So can I assume that it's not an issue or should I speak to my GP about it?

Should probably say, the eyelid has been a problem since birth, nothing to do with the flat-head!

Thousands of threads on this - plagiocephaly. GPs generally are rubbish at this. Hair will cover it but it isn't cosmetic and your first step should be to have the assymetry of the child's head measured. Check out on yahoo the support group.

From what I've seen, she's just young enough- it seems to be anything over a year is too old. The results tend to be very good and I've read reviews where people have said that their children really liked the funky helmet they wore! There's lots of stuff on the web with some useful before and after pics. Some of the ones I've seen result in much better looking child, esp looking at profiles. Hair growth all very well and good, but what if she doesn't get much hair til she's 5 and what about if she wants short hair when she's older? The procedure is apparently painless. some heads sort themselves out on their own, some don't, my neice's hasn't and she looks like she has a massive top of head, flat back of it and a little face. My brother and SIL were advised it would sort itself out- she's now 4, it hasn't and its all down to lots of time spent on her back as a wee baby. Not the fault of her parents, they were just following received wisdom on how to lay babies down. With their second, they made sure he spent lots of time when awake on his tummy and used a sling rather than pram all the time. Result- great shaped head. I've seen babies with the helmets on and they look rather cute! Well worth investigating- not sure if its available on the NHS. Hope this helps and is totally from a non-expert, just researched etc for my bro.

I've got a 4yo nephew who has this condition. It was very noticeable on him as a baby because he had hardly any hair, but now he has hair you can still notice but not as much. They were told it was nothing to worry about by their GP.

9 month old is generally considered too old for the helmet therapy. The hair will cover it, she'll be fine.
One of our twins wore helmet for couple of months and has a perfectly shaped head now,(had a very bad case of plagio before)however, we started when he turned 4 months and his head was growing very fast.

One of DS2's NCT group had a really misshapen head until a few months ago. She's completely normal now - at 18months. My little brother also had the same thing (we used to call him Frankenstein - aren't children lovely). Again, he's fine now and bald so you'd notice. I'd go a bit of a google if you're worried x

We know of 3 families who were told the same - it'll correct itself blablabla... Sometimes it does. However, one of the families mentioned is on the verge of suing their paedi and GP as DC would need a cranial surgery to make his head normal...
The other two have given up hope as DCn are 6 and 7 respectively and still with very misshapen heads, sadly.

Hi all and thank you so much for your responses.

It does seem to be less noticeable as she's getting bigger and it is right at the back of her head.

The one thing that really worries me about the helmets, which will likely be different for my DD than other children, is that due to her "faulty" () eyelid, she has to put her head right back to see when people are standing in front of her, or when things are above her natural eyeline. The Docs are very impressed that she does this as she's already learnt to compensate for that problem. They're not planning to correct the eyelid problem until she's about to start school (they did threaten to leave it until she was a teenager but there was no way that I wanted her subjected to bullying, you know how cruel children can be...), but obviously this is already going to be having an impact on her neck movement, I'm not sure that she could cope with having to do that AND where a helmet. I would imagine that it would be too difficult/heavy to constantly be putting her head back with it on and she may give up with the eye and develop a lazy eye.

Also, does anyone know whether NHS can refer you to speak to someone about it? I've got private healthcare through work and so wondering whether this is something that might be covered...

Thank you again for all your information.

I get so annoyed when people dismiss this by saying oh they will be fine, the hair will cover it, etc etc.

True plagio will not correct itself over time, you have a fairly small window of opportunity to fix it and it is not a cosmetic problem.

Those parents who did nothing about their child's flat head and whose shape has turned out normal are very lucky. You are taking a gamble.

Yes, private healthcare is the way to go, Dawn as ime the NHS is crap with this situation.

Agree with others, the NHS don't recognise this / say they grow out of it etc etc. The helmets are about £2k all in, but you can fund raise for it (I think there are a couple of Primary Care Trusts who offer it on the NHS, one being Bristol, if I remember properly - this might have changed now).

You could take photos and email them through to your nearest supplier and see if they think it is worth an initial assessment? They are profit making, but are quite honest and genuine about the diagnosis/severity/likely success of treatment and there is no obligation.

It is an undertaking, financially, emotionally and practically, but we soon got into the swing of it and so glad we did it when we did.

Google plagiocephaly and you'll find various websites which will help (and the helmet suppliers websites).

Good luck

My eldest had a helmet for a very mishapen head (severe plagiocephaly), she looked like she'd been smacked in the face with a frying pan, it affected the front and back. So glad I went that route for her. My dd2 had a much smaller flat spot (mild plagiocephaly) and I repositioned her head between 5-9 months so she wasn't lying on the flat spot making it worse (the flatter it gets, the more they want to lie on it!) I did this with a special soft pillow and a shaped foam mattress. Her head just grew out and you can't see it whatsoever. Once they are sitting up and moving about, it does tend to grow out a bit, but there are no guarantees. If you think it looks awful, I'd go to one of the helmet providers and get it measured, you can then see how bad it is, and see what others with similar measurements have done. I wouldn't wait though at nine months, your window for decisions is quite small and even if you decide not to go for a helmet, you can help it grow out by keeping her completely off the flat spot and encouraging sleeping on the front/side at that age.

I'd also say that the helmets are quite light so your concern about the eyeline might not be as bad as you think. They are lightweight plastic. I wouldn't let that stop you investigating, even if you then decide against it.

Thank you again for your responses.

You can't notice the problem at all from the front. Her face/head looks completely normal, it's only from the side and the back that you notice it.

Taking her for an appointment with the GP tomorrow and short of saying "I'm only bringing her here for you to refer her because I've heard that the NHS are crap when it comes to diagnosing these cases" , I will insist on a referral unless the particular GP can give me some real information on the problem. I will not leave with a "She'll be fine" diagnosis unless they give me something to back it up with.

DD is already sleeping on her side of her own accord at night and is sitting up so is rarely on her back. Hoping that this may at least stop it getting worse.

out of interest- if not recognised or treated at all what are the effects?

Gah! I'm with FAB - this is not something to be easily dismissed.

at 9mo she will be mostly upright by now, so this will help a lot.

I will try and find the amazing thread where I got lots of help on this matter

brb

here