Guestbook
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Name: Claire McCready Time: 14.00 21/06/2006
Comment: My son Robbie had his Cranio helmet fitted back in February 2006 and his degree of plagiocephaly measured 15mm. He is now down to 3mm and we are due to finish treatment at the end of July. The difference in his head shape is truly amazing.

We were NEVER told to reposition Robbie, even though we questioned his head shape at nine weeks old with a paediatric doctor. We now know that Robbie suffered from torticollis, but this too went undiagnosed and he did not receive physiotherapy. Over the months his head shape got worse and worse, and although we continued to raise this with our health visitor and GP there was still no mention of plagiocephaly or repositioning. We were simply told “It will fix itself in time” and “His hair will grow and cover the deformity”. Thanks to Headstart4Babies (with whom I have now become a trustee), Robbie now has an almost perfectly round head. We will be eternally grateful to Dr Blecher and Headstart4Babies for helping us achieve his beautiful round head.

I created a petition which was signed by over 15,000 people and Headstart4Babies supported and promoted this petition. It is currently being considered by the Scottish Parliament and already there are changes taking place in Scotland with regards to plagiocephaly. In October 2006, NHS Scotland will be handing out a leaflet on plagiocephaly advising on repositioning to all new parents. Without the support of Headstart4Babies we would never have achieved this. Again, we thank you from the bottom of our hearts.

All our love
Claire McCready, mum of Robbie

Name: Caroline Stoyle Time: 18.00 30/05/2006
Comment: Even though our son did not need a helmet fitted (after a consultation with Dr Blecher in September 2005), it still upsets me when I read articles in Headstart News about concerned parents mentioning their worries to Health Visitors and/or GPs and getting the standard fob-off of ‘things will improve/there’s nothing to worry about’. Things won’t improve unless repositioning techniques are used, like we did with our baby. If we had not received the advice and guidance of Dr Blecher in June 2005, we too would be yet another plagio story. If only the message could be drummed into health professionals that simple things, such as tummy time/limiting the amount of time a baby spends lying down/sleeping them on their side, actually work. It could be so simple, but instead they provide false hopes. We will be eternally grateful to Headstart4Babies because I know that if I hadn’t contacted you, the outcome to our story would have been a completely different one.

Name: Christine Cubbon Time: 14.00 23/05/2006
Comment: My eldest son Michael was eight last week, and whilst his head did round out from the really deformed shape it was after a difficult birth (he had a very large head), torticollis fixed his head to one side. His head is still misshapen of course and I just wish there had been more awareness of helmets just a few years ago.

Michael is having to go for plastic surgery this week as his ears are in very different positions and one sticks out – he is getting teased at school, and more importantly has noticed it himself.

Eight years ago, we were ‘assured’ that his head would round out naturally. I found it hard to believe – I couldn’t believe it wasn’t squashing his brain! (It didn’t, but it was so dented!) I used to cry when I took him out because it was noticeable.

Your website is great – I have worked to raise awareness of the condition in my Jo Jingles music classes. Keep up your valuable work!

Name: Nathan Hill Time: 14.00 15/05/2006
Comment: Due to an unrelated issue our baby daughter had to see a physiotherapist regularly from age two weeks. On our first session with her she noticed a slight flatness on one side of our daughter’s head and recommended the SleepCurve mattress. I would recommend that concerned parents investigate this mattress as I’m confident that it has helped prevent our daughter suffering from this condition, which I see so often in other babies.

Name: Michelle Morgan Time: 14.00 12/05/2006
Comment: When I gave birth to my first child I too was told to put him to sleep on his back at all times. However, when your child sleeps for nine hours through the night from birth, you would have thought that the risks of plagiocephaly would have been discussed by your midwife or health visitors.

My son James, who is now 15 months old, is quite obviously a sufferer of plagiocephaly. I had always been advised by GPs, midwives and health visitors in the midlands and in Hampshire where he was born that there was no real problem with the shape of his head and that it would right itself with time. There has never been any mention of plagiocephaly, and it was not until researching online that it became apparent he had this condition.

Thankfully, since he began sitting up for the majority of his day and crawling round the house, James’ head is beginning to change shape of its own accord. The once badly inverted spot over his Lamboid suture is now returning to a ‘normal’ shape.

There is a strong need within the NHS for GPs and health visitors alike to be trained in the symptoms, side-effects and treatment of plagio, as at no point in James’ life has the word even been uttered to me by medically trained personnel. It was only after reading up on the condition (on websites largely from the US) that I was able to make changes to James’ routine – such as sleep repositioning and tummy time – which, over the last six months, have made such a dramatic difference to his head shape and stopped him from favouring his left-hand side.

More websites like this one are needed by women like me who cannot get the answers they desperately need from NHS staff – keep up the good work!
Name: Lynne Time: 16.00 11/07/2005
Comment: I really like your site. It's good to find a UK site and the fact that you are non-profit making is refreshing!
Name: Diane Time:10.46 23/06/2005
Comment: Excellent information
I think it is great that more and more people are becoming aware of plagio and brachy. Your website gives hope to worried parents and the inspiration to correct their babies head shapes when the NHS are clearly not worried or supportive enough.
Name:Gordon and Leisa Allison Time:11.00 29/05/2005
Comment: Thankyou
Thanks to the Headstart4Babies website and Philip Saich we were able to make an appointment to meet Dr Chris Blecher. We travelled from Glasgow to London to have our little boy Jack's head measured, which thankfully was only 9mm out of alignment and required no treatment. We now feel completely satisfied with the shape of his head and know we have done everything we can. Keep up the good work and we wish Headstart all the best for the future.
Name:
Helen and Phil Nickells Time:10.36 3/05/2005
Comment: Hi, I just wanted to say what a great website this is – and it has given me complete confidence that I am doing the right thing for my son Harry by having a STARband fitted on Tuesday next week.

Harry is just over 11 months old, but Steve Mottram feels it is not too late for him. I’ll update you on his progress.
Name: Paulene and Rob Time:10.42 6/04/2005
Comment: Just to say what a fantastic and helpful website this is. Oliver has been diagnosed with 30mm asymmetry which is very severe and we are having his helmet fitted in 2 weeks time. He is 6 months old and we have been told he will need to wear his helmet for between 6 and 8 months but from all the success stories you have we are hoping it will be less. Thanks once again. The more people aware of this the better.
Name: Abi Time:11.27 21/03/2005
Comment: I wanted to say many thanks for your help and advice, which was really useful in informing our decision.
Name: Tracy Time:11.26 21/03/2005
Comment: I have found your website extremely useful as so many of the other sites about plagiocephaly are American and the contacts are not pertinent to the UK.
Name: Brendan Time:11.25 21/03/2005
Comment: I've visited your website a few times already. It's an excellent idea and very well executed (coming from an IT consultant!).
Name: Kimberley Evans Time:11.05 14/03/2005
Comment: Thank you
I saw a segment on my local news, South East, today, which alerted me to your website. It's fantastic: my daughter has by all accounts a severe form of brachycephaly, and you have given me the confidence to go ahead and push for treatment. Other people have commented for months that her head is very flat at the back, and being a protective mother I just ignored them and thought she was a beautiful baby girl. However, we are now convinced the shape of her head is stopping her from moving freely. She will only lie on her tummy for about ten seconds as the front of her head is so heavy, which is obviously going to inhibit her when she is learning to crawl. She is also very restricted when trying to roll over. She can't get over the point in her skull!

It seems like a lot of money at first, especially as I'm not going back to work, but what price to pay for our daughter's movement! Wonderful work, great site. I was wondering if there was any way we could use the site to contact each other, or to find people who lived in our area?

Keep up the wonderful work.
Name: Rachel Time:11.03 14/03/2005
Comment: Response to Guardian article
I read the Guardian article with interest after my mum sent it on to me, complete with the picture of Ben in his helmet. I have to say I agree wholeheartedly with Gary Power, who has already commented in your guestbook, and for those who pursue the helmet option for their child I can only wish you all the best.

However, my son Charlie had an extremely asymmetrical head which we noticed but ignored until he was admitted to hospital at nine weeks old for something completely separate. It was only while we were in there that the consultant paediatrician alarmed us by saying that he thought Charlie’s head had ‘fused’ too early as it was so rigid and the plates in his skull were so overlapped that his fontanelle was nearly non-existent. The hospital X-rayed his head and then fobbed us off with comforting words, saying that it would sort itself out by the time he was three or four.

Luckily a colleague at work has a son born a day after Charlie who also has an ‘odd noggin’ and she had been told about a wonderful osteopath locally who would see and help babies with wonky heads. This osteopath offers two free sessions for all babies aged less than one year old, and then advice about further treatment. Charlie saw him regularly for about eight weeks and then at various intervals, depending on progress, general health and rate of growth. His head is now almost completely ‘normal’, in that it is only a couple of millimetres out of line at the back – almost unnoticeable in fact. We have been advised to return in certain circumstances, but basically he has completed his treatment.

The best thing is that Charlie clearly loved the treatment and was completely chilled out after each session, which lasted from a minimum of 15 minutes up to 25 minutes, depending on how his head responded to treatment each time. At £30 a session it may seem pricey, but much less so than a helmet, it appears. Our osteopath would share the concerns of parents who have children with oddly shaped heads as he has told me of quite a few cases of older children that he has treated. Many of these children had been suffering from headaches plus a whole assortment of related problems such as difficulties with attention at school. I think it would be wise for your website to highlight the range of treatments available, even if it is just by people like us sharing our experiences.

All the best
Name: Alia Time:16.58 11/03/2005
Comment: My son’s name is Murtajiz Hussain Khawaja, and he was born on 31 May 2004. He’s going to be seen next week and hopefully we can get started with the treatment. I would like to thank you for setting up your website, which I came across through the Guardian article on the net. I was immediately reassured and felt a glimmer of hope, as my health visitor had just made me think there was nothing to be concerned about – which is why it’s taken me so long to try and find alternative help. I was under the impression that we were isolated in this problem and felt embarrassed to ask for help.

I will keep you posted on his progress, if we do go ahead with the STARband™ treatment.

Thank you once again.
Name: Kiera Wright Time:11.38 09/03/2005
Comment: Well done!
Both my sons have had helmets fitted by Dr Blecher. The eldest (now two years old) has a great head shape and my youngest is still in treatment and doing very well. I have to commend you on the efforts you have gone to in order to produce a website. I wish I had the drive that you have. I would very much support lobbying the NHS to conduct research into the causes of positional plagiocephaly and providing helmets to those children afflicted by the condition. For your readers who have not had a helmet fitted, I can say with confidence that my sons were unaware of the helmet and suffered no discomfort. Thank you again.
Name: Abi Time:13.55 25/02/2005
Comment: You are providing a very important public service and those of us benefiting from it are very grateful! We will certainly keep you posted on progress.
Name: Vivien Mitchell Time:13.50 25/02/2005
Comment: I read your article in the Guardian yesterday evening and your story reads like ours. Many thanks, and so glad we read your article.
Name: Anja Wever Time:13.45 25/02/2005
Comment: I have read Ben's story with great interest.
Name: Tanya Lyon & Stuart Robinson Time:13.25 23/02/2005
Comment: Thank you
I cannot tell you what a relief it was to read the article in the Guardian yesterday (22nd Feb) - which also referred us to your site.

Our daughter, Evie, is now 6 months old. From about 2 months of age we noticed that her ears were misaligned and that one cheek is more prominent than the other - she has two completely different profiles when you look at her side-on. We have constantly raised this issue with our Health Visitor and with paediatricians at our local hospital, but have been told that flat-head syndrome is now common due to back sleeping and that her hair will grow over it - we have been made to feel as though we have been overreacting and ultimately end up feeling completely frustrated - we don't feel that her hair will disguise the problem at all, particularly if she wishes to wear her hair up as she gets older. We have tried turning her in her cot to encourage her to sleep on the other side, but this just doesn't work.

As a result of seeing the article about your experience, we have now contacted Steve Mottram and are pleased to hear he will be opening a clinic in Leeds very shortly (we live in York).

We have found your website extremely useful - to have no information at all (no-one has ever mentioned the word 'plagiocephaly' to us, and we have spoken to a number of health professionals!) and then to find that there is information, support and treatment available has been a revelation.

What can we do to encourage the NHS to take this problem more seriously?

Thank you so much.

Name: Gary Power Time:13.20 23/02/2005
Comment: I think you're mad
Hi Headstart4Babies,
Let me start by saying that I have sympathy with people who want the best for their children, and wish you luck - I hope you conquer.

However, I've a daughter now 16 months who suffered from tortacollis from birth to about three or four months of age. She has a misshapen head as a result of sleeping to one side, and had to have physiotherapy to correct what was a pretty serious, and potentially chronic, neck problem.

There is absolutely no evidence at all that she will ever suffer from having an odd noggin, and indeed is the most charming and happy child, and completely normal in every respect, apart from a capital asymmetry. I hate to think how she would feel today if we had made her endure the helmet for as long as it took to square her up.

All of her teeth have appeared in regular fashion, despite the scare stories, and she obviously suffers no pain. I think it is irresponsible of you to not demonstrate on your website prominent acknowledgement that there is no real reason to go through with the helmet treatment other than cosmetic.

Our daughter has now decided to grow a full head of hair, and to be honest I'd all but forgotten her head was askew until the hagiographic article in the Guardian today (always the one for alarming the well-meaning amongst us). And also, I'm not sure that I'm not surrounded daily by people with misshapen heads, and I've just never noticed.

One of the best defences against bullying is strong self image, leading to self awareness and confidence. It's hard to think of anything that could undermine that more than a reliance on unnecessary treatments and therapies to correct harmless variations from the norm.

Keep up the good work.
Name: Sarah Time: 15.30 11/02/2005
Comment: Hi, I think the website is really good. I am new to plagio and my six-month-old son is going to start treatment soon. When I first looked into what could be done for my son, I was horrified that there seems not to be much help in the UK, only abroad. Since finding out about Plagio UK [parent support group at http://groups.msn.com/plagiouk], it has been a big help to me being able to contact other families who are in the same position, and they have been very helpful (thanks all of you!). I am really glad that you are raising the profile of plagio in the UK by creating this website – people who I have spoken to in my area don't know what I am on about! I think it is vital that there is more awareness of the condition.
Name: Harriet Time: 14.30 11/02/2005
Comment: I think the site looks great and is a fantastic resource for worried parents and people who want more information – well done, what a huge amount of work!