Scientific papers

January 4, 2010

- Rich list of Scientific papers on the site of Ahead4Babies
- A paper on the role of helmet therapy.
- Papers on the impact of untreated Plagio in the Yahoo Group Positional Plagiocephaly
- Dutch study: Molding therapy of positional plagiocephaly: subjective outcome and quality of life.
- Texas study: Molding helmet therapy in the treatment of brachycephaly and plagiocephaly


Treatment outside of the US and UK

January 4, 2010

I have found providers in the following countries:

Spain – US-based Cranial-Tech
Switzerland – Ahead4Babies
Germany – Ahead4Babies
Taiwan – PrettyBaby, related to US-based company
Australia –
Singapore –


London Area Helmets for Brachycephaly and Plagiocephaly

January 4, 2010

I have found 3 providers:

1- Cranio-Online – This is the doctor written about in the BBC report, but he has now started a clinic in London, Ahead4Babies.
Dr. J. Christoph Blecher
Maxillofacial Surgeon
21 Eldon Road
Kensington
London W8 5PT
By appointment only:
Phone: UK: 07812 652250
or: +49 (0)2771 2678872
blecher@transmit.de

Ahead4Babies – This site has an excellent page with research papers. It is in central London.
info@ahead4babies.com 020 7487 4874 (clinic), 07982 706 454 (mobile)
76 Wimpole Street
Westminster
London
W1G 9RT
Our normal opening times are 10am-5pm Monday to Friday, although you can call our mobile anytime outside these hours.
Wimpole Street runs parallel to Harley St, just north of Oxford Street. There is some metered parking on Wimpole Street (and on adjacent streets), as well as an NCP car park on Welbeck Street. If you prefer to come by tube, the nearest stations are Bond Street and Oxford Circus (both are 5-10 minute walk).

Ahead4Babies charges £2000 for the entire treatment. This includes the initial consultation, helmet fitting and all follow-up appointments.

There is no charge for the initial consultation. If you would like to send us your baby’s photos before consultation, we will also have a look at them, free of charge.

2- The London Orthotic Consultancy LtdSaeed Hamid is the one who treated Fenley.
Unit 6&7 Canbury 2000 Business Park
Elm Crescent
Kingston upon Thames
Surrey
KT2 6HJ
How to find it
T: +44(0)20 8974 9989
F: +44(0)20 8974 9977
E: info@londonorthotics.co.uk

The total cost for the LOCband treatment is: £1950.00.
2 payment option:
1: Pay the full amount of £1950.00 at the time of the first scan and your decision to proceed with the fitting of a LOCband. Once the initial payment has been made there are no further charges or any hidden costs for the duration of your baby’s treatment.
2: Pay by installments,this allows the cost of treatment to be spread over 4 payments with no interest charges.

The full cost of £1950.00 includes:
* All of your baby’s required appointments from start to end of treatment, no matter how many are required
* The LOCband
* Appropriate cleaning fluid for the LOCband
* All correspondence/reports to your GP/Pediatrician to inform them of your baby’s progress
* Full telephone support.
* Extra reviews at short notice.

3- Technology in Motion from Ossur
132-134 Arthur Road,
Wimbledon,
London,
SW19 8AA.
London Clinic

Technology in Motion is 100 yards to the right of the Wimbledon Park Underground station which is on the District Line. If you are arriving by train, change at Wimbledon and take the underground one stop to Wimbledon Park. Link to map here


Parent Blogs on Brachycephaly and Plagiocephaly

January 4, 2010

Look at the lastest blog postings about
- Plagiocephaly
- Brachycephaly
- Flat Head Syndrome (It is not a very clean search)

Below are listed a number of blogs in no particular order, but some organized by clinic used.

Ahead4Babies clients
Our Little Flower – A UK mother who used the Ahead4Babies clinic.

Ossur clients
Jon and Alison’s blog – UK-based parents who treated their child in 2007 with Starband, which seems to be the old name for Ossur?

London Orthotics Consultancy clients
Finley’s Brachycephaly Journey – An excellent description of one mother’s experience. She used Saeed at the London Orthotic Consultancy.

Other parental blogs
Goodman thoughts – One angry father in Asbury New Jersey who expresses the emotions that many of us feel. Did he really punch the doctor? Here is his follow-up post with the results of the therapy.

Maysa’s Blog – The journey for Maysa and her parents through Plagiocephaly and Brachiocephaly

Kate Just In – A Singapore father’s experiences. (Two helmets until the right one came.)

Flat Head (a video) – A video on the Cranial Tech YouTube channel. Although produced by a vendor, it is worth watching for one mother’s explanation and experience.

Needing More Hands: A mother’s story, from UK. Parents who want, but cannot afford the helmet treatment.

Bling Your Band – An incredible series of photos of helmets that have been “bling-ed” by a person who has made a specialty of decorating them. Very amusing!


Helmet Vendors in the US

January 4, 2010

Listed in no particular order.

Hangar Prosthetics and Orthotics

Cranial Tech – Quite a bit of information on their site, including this comparative set of photos. They have a very useful step-by-step self-assessment.

Orthamerica – which has branches in overseas Taiwan and Japan. Their site has quite a bit of useful information.

Taiwan Orthotics and Prosthetics Company
Yang, Yu-Wen, PT Cheng, Yu-Lin, Orthotic Designer
4f., No. 23, Sec. 6
MinQuan E. Road, Neihu District
Taipei City 11494, Taiwan (R.O.C.)
Taipei, Taiwan
Phone: 886-2-2794-2222
Fax: 886-2-2793-8282
Email: cj@e-onp.com.tw
www.prettybaby.com.tw

Ai-Met Company, Inc.
Satoko Tabako
Estem Court Tenjinbashi 601
2-3-46, Kokubunji, Kita-Ku
Osaka, Japan
531-0064
(816) 635-27898
Email: stabako@ai-met.com


News Reports on Brachycephaly and Plagiocephaly

January 4, 2010

A search for the latest stories published on Google News:
- Brachycephaly
- Plagiocephaly

Surrey Herald, March 11, 2009: Warning to parents after baby’s head grew flat

Arizona Daily Star: Triplets get head-shaping help

Worthing Herald: Worthing Family’s Fight for NHS Treatment

BBC: “We put our baby in a helmet”

Lancashire Telegraph: Gistburn Mum Shares Flat-Head Syndrome Experiences with Experts

Dad’s Bid to Raise Funds for Treatment

Cambridge Evening NewsMother’s Anger Over “Appalling” Baby Care

Romford Recorder
James Colasanti

Mother Claims Baby’s Condition was Ignored
The Harrow Times
Nadia Sarbout

Flathead Syndrome Toddler’s Fighting On
This is Sentinel
Kelly Shorrock

Head Start
I’m Pregnant! Magazine
Wendy Glass

Private Treatment Hope for Baby Joel
This is Sentinel
Harley Harp

The radical new treatment for ‘flat head syndrome’

The Independent
Emily Hohler

Junior Head
Junior Magazine
Susan Walls

Letter: Why this silence on a preventable deformity?
The Argus
Rachel Brett


Groups, Forums and Organizations on Brachycephaly/Plagiocephaly

January 4, 2010

Listed in no particular order.

Plagiocephaly Care UK

Headstart4babies.org
A UK charity founded by parents who faced a battle to convince their GP and other doctors to take their son’s plagiocephaly seriously. They corrected his head completely, thanks to their dogged determination.

Plagiocephaly Parents
Facebook Group where “parents of kids with Plagiocelphaly and other cranio diagnosis to come together and help eachother get through this difficult time.”

Yahoo Groups
To join you must sign up for a Yahoo email (free). A huge amount of useful information on the sites.

All About Plagiocephaly – A user group referenced on the Orthamerica website. I am not sure if there is any direct link with the company, but the group seems filled with parents.

Plagiocephaly – A great user group with more than 9,000 members as of early January 2010 and an excellent section on research, with a collection of scientific papers.

A list offered on the site of vendor London Orthotics (comments are from London Orthotics)

http://www.headstart4babies.co.uk/
Headstart4Babies is a UK based charity. The charity aims to raise awareness of plagiocephaly and brachycephaly and can offer parents financial support for treatment.

http://www.plagiocephalycare.org.uk
Independent Scottish based parent support group for parents. The site offers a full discussion forum with information and help for parents.

http://health.groups.yahoo.com/group/Plagiocephaly/
Independently moderated US based parent support group providing message board, information and links to further information.

http://www.cappskids.org/
Craniosynostosis and Positional Plagiocephaly Support Inc. An American charitable status support group. Started by a mother whose child had Craniosynostosis to offer support and information to other families, now offers support to families that have a child or children with Positional Plagiocephaly.

http://health.groups.yahoo.com/group/OlderPlag
Independent support group for parents of children over 2 years of age who have Deformational Plagiocephaly but were not treated with a cranial orthosis.

http://www.craniosupport.com/
Web site that provides links to a variety of Plagiocephaly web based support groups. It lists Plagiocephaly support web sites mainly US and Canada but some sites from other countries including the UK.


Brachycephaly and Plagiocephaly experiences in Asia

January 2, 2010

My child had a case of plagiocephaly and brachiocepaly and had her helmet fitted in one of the ortothics provider here in Singapore. They are associated with a local hospital. They made the helmet in a traditional way where they had to make a plaster cast of my child’s head shape and made the helmet shape accordingly. I had to bring pictures of helmets done by Starband.

As for the experience, i have to say we didn’t see big improvements in my child’s head shape after using it for a few months, perhaps because of number of factors.

First, my child was already around 15 months old when we actively sought using the helmet therapy. At that time, the craniofacial specialist told us that any change will be unlikely since her cranium had already hardened at that point. But we insisted we’ll try it and hope for the best.

Second, I think the weather in Singapore doesn’t help with making pre-toddler to wear a cranium helmet. She was at an age where she can already remove the helmet by herself so she takes it off whenever she’s uncomfortable with it.

My child did sweat a lot whenever she wears her helmet, so the recommendation to have it worn for 23 hours a day became an impossible task for us.

And third, the way they monitor my child’s head shape was not as thorough as i thought it would be. We only had to go every 2 weeks to have it checked and they will just check the pressure points on my daughter’s head to see if the helmet shape is doing what it’s supposed to do. My child did have the red marks on the forehead to show where the pressure points were after wearing the helmet for a few hours.

But there were no detailed measurements or any computer scans involved. Just a visual assessment by the orthotist.

So yeah, i cannot really say if the results would’ve been better if any of the factors above were any different.

As for treatments in Asia, I think there are providers of Starband and Starscanners in Japan, Korea and Taiwan.

Check the locations here: http://www.orthomerica.com/technology/scan_locations.htm

The DOCband from Cranialtech is one of the popular treatments in the US, but unfortunately is not available anywhere else except Spain. Not to mention they are quite expensive.

Have you tried repositioning techniques for your child? Sometimes that’s the easiest way to treat misshapen heads for younger infants. Another popular treatment is Craniosacral therapy which involves some head massage. We’ve not tried it but some parents do say it worked for their child.


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