You can contact the DSRF by phone  01494 521 826 

or by email:   dsrf     @     dsrf   .   co. uk    (Remove the spaces for the correct email address)
Most questions you might have will be discussed on our website, but we can help you to find that information

Bright Beginnings, for new parents

We want new parents on our mailing list in order to send them a helpful new booklet we print called "Bright Beginnings".

Click here for more information on Bright Beginnings

The book is free to new parents, so sign up now. 

Please send us an email to register or complete our online membership form.

Click here for more information on our Membership Categories and discounts available on resources

Coming soon : a pdf version of 'Bright Beginnings'

The DSRF has a online parent support group. To join, please visit : http://groups.yahoo.com/group/DSRF .

We are now on Facebook. Join the group here.
 

Antioxidants and Folinic Research Project Concluded in 2006 -  Results expected This is the biggest project ever undertaken to help children with Down syndrome. 156 babies under 6 months at entry were in the project . We have been testing a new therapy that may improve health, growth and development of children with Down syndrome. Babies received excellent healthcare from doctors and nurses who ran the project. Health, growth, physical and mental development were monitored for the full 18 months each baby was in the project. Headed by a team of doctors from the Institute of Child Health Children's Hospitals in London, and Birmingham and the West Country. Parents & Doctors -- Learn more about this project -- visit the PROJECT WEBSITE Read about the Antioxidant Therapy and the Project Details on the DSRF website View a Slide-Show discussing the Scientific Basis for the project The Institute of Child Health in London and  Birmingham and the Children's Hospital in the West Country ran this £500,000 project which has been organized by the DSRF in the UK.  Click here to read about the project

New Parents who read this letter is search of information on how to help their baby should be aware that babies with Down's syndrome have a 40% incidence of heart abnormalities at birth.

You should ask a heart specialist to examine your child and do an ultrasound examination. Excellent healthcare is available within the UK - so there is no need to panic.

Parents who want to buy a book please contact the following organization:

Medical & Surgical Care for Children with Down Syndrome - 

A Guide for Parents

ISBN 0-933149-54-9 ($14.95)

Woodbine House 1995

(Phone 800 843 7323)

Health Care Guidelines for Doctors are on our Website along with Growth Charts. Click here to read that information

If you think there is a heart problem contact The Down's Heart Group (Click here for information) this parent group has lots of experience and can provide the support you need. If no heart problem is detected, further examinations will still be needed as the child grows up. Undetected heart problems have been known to result in unexpected loss of life in healthy children even up to age 6. With the correct medical care there is no reason for these problems to go undetected.

If your new baby is throwing up and has not had a motion since birth... This is a serious matter. You must get immediate attention for the baby. About 10 to 18% of babies with Down syndrome have anatomical differences. Hirschsprung's disease (Click here for information) effects the last part of the GI tract. Children with this condition become very constipated, there is a swollen abdomen and in many instances, vomiting. You need immediate medical attention for the baby so go to your nearest hospital. Doctors are very understanding when there is a new baby at risk and it is important to act quickly.

Brain growth is very important during the first year and breast-feeding is recommended for 4 to 5 months, this is known to increase the IQ. There is scientific evidence of increased oxidative stress and a shortfall of antioxidants in Down's syndrome. Dietary supplements of antioxidants are indicated for the mom and for the baby. These are easily available but you should work with your doctor and use the correct dose rate. There is information on our Website. and we are working on research projects to produce the clinical evidence needed by doctors. Omega 3 and Omega 6 oils are also needed by the baby and these are available as supplements at health food stores. Mothers milk has high levels of DHA and DHA is essential for brain growth. The body can make DHA if it has the essential oils in the diet, about 10% DHA is in fish oils. Having all of these supplements brain growth should be increased and cell damage much reduced. A healthy diet is very important and this means lots of fresh fruit and vegetables which are high in antioxidants, cold water fish(salmon etc.) provides Omega 3 oil, avoid saturated fats and fried foods. Dietary supplements are not a substitute for healthy diet, they are in addition to that diet.

Targeted Nutritional Intervention (TNI) : You can read about TNI, which is a more complex formulation here. This therapy is quite expensive by UK standards. No clinical trials have been ran on TNI so all evidence of usefulness is anecdotal. This means any evidence is based on observations which may be effected by the expectations of the observer. We provide lots of information so that parents and doctors can investigate for themselves. However it is quite probable that the most important benefit from using TNI is due to the antioxidants in that formulation.

Read on if you want to learn more about the issues surrounding Down's syndrome...

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