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Newly Diagnosed

It can be a very confusing and emotional time when your child has received a diagnosis of Prader-Willi Syndrome. It can come as a real shock and you may be wondering just how this will affect you and your family. It is important to say that you and your child are not alone.

Every child is an individual and not every person affected by the syndrome will have all of the characteristics. They are also seen in varying degrees. Early diagnosis can give your child a more positive start with early intervention and sensible eating plans. It is important to understand that children with PWS are generally happy and delightful and it is very easy to love them.

It is a very big learning curve that we start when we find out that our child has a disability. Many parents feel that the best way to cope with all this is to take one day at a time. It has been said that there are stages in a cycle that people go through when they have a child with special needs – the grief, the denial, the anger, the depression, the acceptance, and finally the empowerment. Through all this, it is very important to take care of yourself and your relationship with your partner.

There are two distinct clinical stages of the syndrome. The first stage occurs from birth through to the ages of two to four. Babies are born with very low muscle tone, which means it is extremely difficult for them to suck. In most cases they will need to be fed initially by gavage or special teats, or with a teat that has a larger hole than normal. Feeding can be very time consuming, but don't despair. It does get better as your child develops more muscle tone.

Babies with PWS don't cry very often and if they do it will be quite a feeble cry - you may find that you need to set the alarm for night feeds. They will also sleep a lot, so it is important that when they are awake they receive visual stimulation and cuddles, which are an integral part of their development.

The low muscle tone means that your baby will take longer than usual to reach developmental milestones. There is a wide range for any child's development but most children with PWS will reach these particular milestones as follows:
   • Smiling - 4 months
   • Independent sitting - 13 months
   • Single words - 21 months
   • Walking - 28 months
   • Sentences - 3.6 years

There are services to help your child through early intervention in areas such as physiotherapy, speech therapy and occupational therapy. These services are available free through the Department of Human Services (DHS) for families of special needs children. Your maternal and child health nurse can give you contact numbers and probably let you know of council services and other avenues of support.

• Some parents have found that the use of the 'Chu-Chu' teat has been very beneficial. This is a teat for low tone, high palate. It should be available through the hospital, or, a speech pathologist.

• Mobiles are great above cribs, and when the baby progresses to a cot have lots of toys and pictures all around.

• Change position of the baby from sleep to sleep so that he/she is not always lying on one side.

• A good idea for when your baby is in a capsule or similar, is to use a padded head rest for extra head support - these are available from most baby shops.

There are some terrific resources available on other PWS Sites - we have included some links here.

From the PWSA (UK) - Children aged 0-2 years
click here

Medical Alert for PWS: A list every parent, and their doctor, should have.
USA - click here
UK - click here

Helping the Infant with Early Feeding Difficulties:
click here

Especially for Grandparents:
click here

PWS Australia Online Community:
Share your experiences and your questions with other families in the same situation.
click here

The PWSA of Victoria Web Site is intended to provide information only - not to diagnose or advocate particular treatment options. The Diagnosis and treatment of Prader-Willi Syndrome should be made through a qualified medical professional. Thus, it is strongly urged that patients do not change treatment without first consulting their doctor. The inclusion of any resource or link in the PWSA of Victoria Web Site does not imply endorsement.