Heller's Syndrome

WHAT IS HELLER’S SYNDROME?

Heller’s Syndrome is also sometimes referred to as 'Childhood Disintegration Disorder (CDD)', 'dementia infantalis', 'disintergrative psychosis' or 'social development regression'. It is a comparatively rare syndrome affecting 2 in every 100,000 children (which is 60 times less likely than Autism).

A child with Heller’s Syndrome will suddenly experience a loss of skills. It usually occurs after the child has developed normally up to the age of 2 – 4. It can occur any time up to the age of 10.

Symptoms include the loss of at least two from:

• Language skills;
• Receptive language skills;
• Social skills & self-care skills;
• Control over bowel and bladder;
• Motor skills.

In addition there may be impairment of two from:

• Social interaction;
• Communication;
• Repetitive behavior & interest patterns.

WHAT ARE THE CAUSES OF HELLER’S SYNDROME?

The causes of Heller's Syndrome are uncertain. It is thought that it may be related to one of the following:

• Epilepsy;
• Measles;
• The growth of tumors;
• The build up of fats in the brain and nervous system.  

IS IT POSSIBLE TO TREAT HELLER’S SYNDROME?

The symptoms of Heller's Syndrome can sometimes persist in the long term. There are no cures but symptoms may be treated. There are normally two methods:

1. Input from specialists in the areas of:

• Speech and Language Therapy (SaLT)
• Occupational Therapy (OT)
• Physiotherapy (PT)
• Educational Psychology (EP)

2. Medication:

• Anti-psychotic medications can be used to treat aggression and repetitive behaviour patterns
• Anti-convulsant medications can be used to control seizures

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