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Our plea over baby’s illness
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| RAISING AWARENESS: Joshua Hallett with parents Amy Wilson and Antony Hallett |
A MOTHER is calling for more resources to be put into a disorder that flattened her baby's head.
Amy Wilson, 25, of Chickerell, says she was shocked to learn little Joshua, now eight months old, suffered from plagiocephaly - a condition where soft baby skulls fix in an abnormal shape.
But when Ms Wilson and her partner, agricultural engineer Antony Hallett asked what could be done they said doctors told them 'he could always grow his hair'.
Since then she says she has spent £1,850 on a head-remoulding helmet - plus hundreds of pounds on trips to a specialist treatment centre in Cardiff.
Ms Wilson said: "When I mentioned the flatness to the NHS they dismissed us and said it would grow out and if it didn't hair would cover it. After extensive research on the internet I realised it might not grow out and found a support group for adults with it and some of them were prepared to pay £12,000 to have their skull broken and reset.
"Others wouldn't step outside their own front door in fear of people noticing their head shape.
"We didn't want Joshua to go through that so we found a clinic in Cardiff, called Technology in Motion, which makes helmets worn 23 hours a day."
But treatment cost is adding up.
Ms Wilson said: "As well as the £1,850 on the helmet I don't dare think about the amount we've spent on petrol going back and forth to Cardiff.
"The NHS says it is a cosmetic procedure, but if braces and ears getting pinned back can get done on the NHS, then they should pay for this too."
Ms Wilson said Joshua had been wearing this helmet for 10 weeks and had eight weeks to go.
She said: "It's looking a lot better now but the real shame is that we didn't catch it earlier.
"Joshua was born with a round head and the flatness started about eight weeks in because he had shortened neck muscles which made him turn his head to one side.
"We now know this could have been easily sorted with a few physiotherapy sessions and spending a little bit of time on his tummy during the day."
A spokesman for Dorset Primary Care Trust said: "Plagiocephaly is quite rare and there is no definitive treatment for it. "It's sufficiently uncommon that not all healthcare professionals would have seen it before or know how to manage it.
"Anything this mother can do to raise awareness of plagiocephaly is to be welcomed. "Other mothers who might be concerned should speak to their GP or health visitor. "In mild cases, babies may not need any active treatment. But there are several ways of encouraging natural improvement in head shape.
"These include early recognition of the condition, letting the baby play on his tummy, altering the way in which the child rests his head while sleeping - although always making sure the baby sleeps on his back - physiotherapy and helmets and bands.
"Dorset Primary Care Trust supports evidence-based treatments where this can be demonstrated to be needed."
11:00am Saturday 3rd February 2007
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CommentPosted by: Mandy Muir, Dundee, Scotland on 9:20pm Sat 3 Feb 07
Hi,
I know Amy as she is a member of a support group I run for families affected by Plagiocephaly. If anyone contacts you regarding the article can you please put them in touch with myself or pass on the support group details?
The article is excellent and will raise so much awareness due to you being the top newspaper in Dorset, thank you so much for your help.
Kindest Regards,
Mandy
www.plagiocephalycare.org.uk
Hi,
I know Amy as she is a member of a support group I run for families affected by Plagiocephaly. If anyone contacts you regarding the article can you please put them in touch with myself or pass on the support group details?
The article is excellent and will raise so much awareness due to you being the top newspaper in Dorset, thank you so much for your help.
Kindest Regards,
Mandy
www.plagiocephalycare.org.uk
Posted by: louis finan, USA on 7:29pm Sun 4 Feb 07
This case shows a problem that existed in the US till recently. There is a new, effective, prefabricated, adjustable helmet for plagiocephaly that any orthotist or pediatrician can fit. Importantly, it costs about a fifth of the helmet in this article and does not require trips to a special center.The helmet can be adjusted so that a second helmet is rarely needed. Thousands of these helmets are being used in the US. Please visit the web site at http://www.asemt.com
This case shows a problem that existed in the US till recently. There is a new, effective, prefabricated, adjustable helmet for plagiocephaly that any orthotist or pediatrician can fit. Importantly, it costs about a fifth of the helmet in this article and does not require trips to a special center.The helmet can be adjusted so that a second helmet is rarely needed. Thousands of these helmets are being used in the US. Please visit the web site at http://www.asemt.com
Posted by: Caroline Bontoft on 8:44pm Sun 4 Feb 07
My little grandsun Joshua, who is 6 months old suffers from flat head to one side and his forehead bulges at that side. I wonder if the ventuse caused this to happen - I noticed that he seemed to have a stiff neck and only every looked to one side. If this is the case, then I think we have a case in that the NHS should pay for any corrective treatment if this is required. What are your comments?
My little grandsun Joshua, who is 6 months old suffers from flat head to one side and his forehead bulges at that side. I wonder if the ventuse caused this to happen - I noticed that he seemed to have a stiff neck and only every looked to one side. If this is the case, then I think we have a case in that the NHS should pay for any corrective treatment if this is required. What are your comments?
Posted by: Jane Carrier, Weymouth on 12:30pm Tue 6 Feb 07
My son is now 10 years old and I was told when he had a flat head at 6mths, by a Gp in Portland that it would grow out when he reached 1yrs old. It never has done, but is less noticable now he is older! I was furious with the Gp not paying much attention to this or even referring us on to the hospital when I returned back. Instead I was told that there was nothing that could be done and also that his hair would cover and hide it! I think GPs need to be aware of this syndrome and stop fobbing off patients when they dont know much about it!
My son is now 10 years old and I was told when he had a flat head at 6mths, by a Gp in Portland that it would grow out when he reached 1yrs old. It never has done, but is less noticable now he is older! I was furious with the Gp not paying much attention to this or even referring us on to the hospital when I returned back. Instead I was told that there was nothing that could be done and also that his hair would cover and hide it! I think GPs need to be aware of this syndrome and stop fobbing off patients when they dont know much about it!
Posted by: Claire McCready, Edinburgh on 9:44pm Tue 6 Feb 07
Congratulations on a fantastic article which will help raise awareness of an ever increasing popular condition in babies.
Plagiocephaly is NOT a rare condition and actually affects 50% of babies under 1 year from mild to severe forms. Unfortunately many Doctors and Health Visitors are not aware of the simple treatment (repositioning) which can avoid this condition occurring in the first place. In Scotland all new parents will shortly be given an information leaflet on plagiocephaly and how to avoid it.
Myself and another 8 families are due to attend the Scottish parliament on 20th February to receive an update on actions being taken on a petition we submitted on plagiocephaly in May 2006. Our petition received over 15,000 signatures. Fingers crossed we will see dramatic changes in the attitude of health professionals regarding plagiocephaly.
Please see www.plagiocephalycare.org.uk for further information or support on this issue.
Thanks
Claire McCready
Congratulations on a fantastic article which will help raise awareness of an ever increasing popular condition in babies.
Plagiocephaly is NOT a rare condition and actually affects 50% of babies under 1 year from mild to severe forms. Unfortunately many Doctors and Health Visitors are not aware of the simple treatment (repositioning) which can avoid this condition occurring in the first place. In Scotland all new parents will shortly be given an information leaflet on plagiocephaly and how to avoid it.
Myself and another 8 families are due to attend the Scottish parliament on 20th February to receive an update on actions being taken on a petition we submitted on plagiocephaly in May 2006. Our petition received over 15,000 signatures. Fingers crossed we will see dramatic changes in the attitude of health professionals regarding plagiocephaly.
Please see www.plagiocephalycare.org.uk for further information or support on this issue.
Thanks
Claire McCready
Posted by: Nicky, U.S.A on 6:34pm Fri 9 Feb 07
Good for you Amy and Antony for not just accepting what the G.P told you!! Thank goodness for the internet...I am not a doctor but if I were a G.P presented with a condition that I was unfamiliar with I too would try to educate myself, maybe by using the internet!! I am trying not to be TOO hard on the doctor involved but to say "He could always grow his hair", come on! And yet again I am flabergasted at the cost to the parents in this case, especially after reading that they may be available elsewhere for a fraction of the price.
I am sure there are many conditions being left untreated because of the lack of knowledge throughout the N.H.S....and many people suffering when they needn't...I am British now living in the U.S and I am amazed at how much information and technology exist within the health professionals here in comparison....it's not perfect but it's about time we all have a level playing field.
Good for you Amy and Antony for not just accepting what the G.P told you!! Thank goodness for the internet...I am not a doctor but if I were a G.P presented with a condition that I was unfamiliar with I too would try to educate myself, maybe by using the internet!! I am trying not to be TOO hard on the doctor involved but to say "He could always grow his hair", come on! And yet again I am flabergasted at the cost to the parents in this case, especially after reading that they may be available elsewhere for a fraction of the price.
I am sure there are many conditions being left untreated because of the lack of knowledge throughout the N.H.S....and many people suffering when they needn't...I am British now living in the U.S and I am amazed at how much information and technology exist within the health professionals here in comparison....it's not perfect but it's about time we all have a level playing field.
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