A Guide for Parents and Carers
 
  Watch this space for an archive of articles from Reaching Out, plus growth charts and pictures.

Growth Charts
Serial measurements of 180 patients with CdLS were obtained in order to derive standard growth curves. Measurements are given in centimeters (height) and kilograms (weight).

Skills Chart
Skills Chart - This developmental chart was derived from the results of a questionnaire, comparing the percentage of individuals that had completed a certain skill to the total group (tabulated by age).

Myths about CdLS
The 10 most common myths about CdLS explored... - by Darrell Cookman, Director of Individual Giving, CdLS Foundation, USA office

About the Foundation

Meet Charles, our man in the Midlands (December 2001)
Foundation gets top new medical advisor (April 2002)
Putting trust in Richard for financial guidance (April 2002)
Research fund’s massive boost comes just in time (April 2002)
On-line success for CdLS website (July 2002)
Meet Trustees: Dave Axtell (July 2002)
Polish group is formed (July 2002)
Care Card is launched at Peebles (October 2002)
A warm welcome to second Lorraine (October 2002)
Meet the Trustees: Lorraine Hawthorne (October 2002)
Trustee Tom wants to further developments (January 2003)
Share your experiences (January 2003)
Care card is ‘best practice' (January 2003)
New, but old hand (July 2003)
Meet trustee Sharon (November 2003)
Get a Pisa the action! (July 2004)
Gathering together old and new (July 2004)
Jackie, the new voice of CdLS(December 2006)

Adulthood

Michael’s new life in home of his own (April 2001)
Good times bad times (October 2002)
Puberty and adolescence in CdLS – a survey of the changes (January 2003)
Overcoming life’s hurdles with Nicky (January 2003)
Help us to get our lives back (January 2003)
This is my story (July 2003)
Determined youngster who showed what could be done (July 2003)
Take up the challenge for day care provision (December 2006)

Alternative Therapies

Music – it’s a language for our children (January 2001)
Massage for young and old (October 2000)
Music could be dramatic key to transform lives (October 2000)
How making the connection made a difference for Ursula (December 2006)

Behaviour

Another BRICC in the hall (October 2000)
A protocol for treating behavior issues (July 2002)
Getting booked for behaviour (October 2002)
Self-injury guide is launched for carers (july 2003)
Low moods from CdLS kids causes concern (July 2004)
Behavioural challenges in children and adults with CdLS (December 2006)
Self Injurious Behaviour (December 2006)
Autistic Spectrum Disorder (December 2006)

Benefits

‘Carer’ benefits facing change (April 2001)
Mobility allowance payments to 3 year olds (April 2001)
Car cash back benefit for Irish families with disabled child (April 2001)
Ginny’s words of wisdom on claiming Incapacity benefit (April 2002)
Spotlight on funding (July 2002)
Invalid Care Allowance now open to over 65s (January 2003)
Could you be eligible for a work grant? (January 2003)
Help is at hand for learning disabilities (January 2003)
Help on hand with benefits (January 2003)
New Euro campaign aims to promote disability rights (January 2003)
Hospitals standards booklet on the way (July 2003)
A quick guide to the new Tax Credits (July 2004)
Insuring your way to a better holiday (July 2004)
Allowance for students staying on at school (July 2004)

Communication

On your wavelength? (January 2003)

Diagnosis

Blood test hope for anxious CdLS parents (April 2001)
Telling a child they have the syndrome (January 2001)
France leads the way in questioning diagnosis and how best to tell parents (December 2002)
Wendy’s real CdLS family (July 2002)
New software may aid early diagnosis (July 2002)
USA Research funding gets boost (July 2002)
Newspaper report raises awareness in Scotland (January 2003)
Care card is ‘best practice' (January 2003)
Anguish of mum and baby ‘Bobbin’ Robin (July 2003)
How a poster helped Debbie discover her brother had CdLS (December 2006)

Death

Sad statistics that help us learn for the future (January 2001)
Further grief for mother of CdLS child in organ scandal (December 2002)
Life data facts ‘could be wrong' (July 2003)
Michael, CdLS UK ‘founding child’ dies in day trip tragedy (December 2006)
Sarah Peacock dies after routine endoscopy (December 2006)

 

Dental

Brushing up those dental techniques (April 2002)
Dentist gets his teeth into tongue brush (October 2002)
A brush with success (November 2003)

Education

Sam’s learning takes a classy double route (April 2001)
Getting an early start (April 2002)
Overcoming life’s hurdles with Nicky (January 2003)
Call for schools to understand problems (July 2003)

Eyes

Children and parents ‘most important’ – not the doctors (October 2000)

Gastrology

Keyhole surgery answer to reflux (October 2000)
Overcoming Reflux problems (April 2002)
Medications to help with Reflux (April 2002)
Dr Peter Gillett looks at the options for treating reflux... (October 2002)
Secret signs of reflux (November 2003)

Genetics

Factsheet explores genetic conditions (January 2003)
Genetic info on web (july 2003)
A breakthrough for all (July 2004)
The news we’ve all been waiting for… (July 2004)
The discovery explained (July 2004)
Gene search special (July 2004)

Hearing

Hearing loss ‘problems’ of CdLs children (October 2000)

Kidneys

Kidney worry highlighted in research by Italian doctors (July 2003)

Neurology

Possible links to other disorders (April 2002)

Octhopaedics

SAC focuses on orthopaedic facts (April 2002)
Setting straight concerns on those issues (April 2002)

Play

Toying with the perfect needs to boost child’s play... (July 2003)

Psychiatry

Book worth a look (January 2003)

Puberty

Puberty and adolescence in CdLS – a survey of the changes (January 2003)
Overcoming life’s hurdles with Nicky (January 2003)

Research

Research blow as funding faces axe (October 2000)
Hunt goes on for gene clues (July 2000)
Mice clue to CdLS gene (October 2000)
Foundation backs research work (January 2003)

Seizures

Seizing the opportunity to understand the condition (July 2000)
Defining and demystifying seizure disorders (July 2000)

Siblings

Sibling Helen speaks out (April 2002)

Speech & Language

Speech problems in focus (October 2000)
Pad boosts speech skills (January 2003)

   
             
             
           
 
 
 
 
 
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