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Back to Health A to Z. Rett syndrome is a rare genetic disorder that affects brain development, resulting in severe mental and physical disability. It is estimated to affect about 1 in 12, girls born each year and is only rarely seen in boys.

Some children with Rett syndrome are affected more severely than others. may not have all the symptoms of Rett syndrome and their symptoms might change as they get older. spceial

These are the main features of each stage:. At first, the child will appear to develop and grow normally for at least 6 months.

There may be subtle s lookign Rett syndrome before the child is recognised as having a problem especially with hindsight. During stage tirl, known as "regression" or the "rapid destructive stage", the child starts to lose some of their abilities. The child will gradually or suddenly start to develop severe problems with communication and language, memory, mobility, co-ordination and other brain functions.

Some of the characteristics and behaviours are similar to those of autism.

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Later on during regression, the child may experience periods of rapid breathing hyperventilation or slow breathing, including breath-holding. They may also swallow air which can lead to abdominal bloating. Stage 3 of Rett syndrome can begin as early as 2 years or as late as 10 years. It often lasts for many years, with many children remaining in this stage for most of their lives. During stage 3, some of the stage 2 symptoms may get better — for example, there may be improvements in behaviour, with less irritability and crying.

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The child may become more interested in people and their surroundings, and there may be improvements in alertness, sppecial span and communication. Their walking may also improve or they may learn to walk, if they could not before.

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Seizures also usually become less of a problem during teenage and early adult life, although they will often be a lifelong problem to manage. Rett syndrome is usually diagnosed based on your child's symptoms, and by ruling out other more common disorders. As a parent caring for with the syndrome, it's likely you'll need help and support from a wide range of healthcare professionals.

Therapeutic horse riding, swimminghydrotherapy forr music therapy have also been reported to be beneficial.

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Ask your healthcare team where you can access these therapies. about caring for a disabled child and care equipment, lkoking and adaptations. Although some people with Rett syndrome may retain a degree of hand control, walking ability and communication skills, most will be dependent on hour care throughout their lives.

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Caring for with Rett syndrome is mentally and physically challenging. Most carers will need social and psychological support. You may also find it useful to contact a support group, such as Rett UKfor information and advice about looking after with the syndrome. You can opt out of the register at any time. last reviewed: 11 October Next review due: 11 October Rett syndrome. looiing and symptoms Some children with Rett syndrome are affected more severely than others.

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These are the main features of each stage: Stage 1: early s At first, the child will appear to develop and grow normally for at least 6 months. Stage 1 is sometimes described as "stagnation". Stage 1 can often go unnoticed because the changes occur gradually and may be subtle. Stage 2: regression During stage 2, known as "regression" or the "rapid destructive stage", the child starts to lose some of their abilities.

Stage 4: deterioration in movement Stage 4 can last for years or even decades. What causes Rett syndrome?

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Managing Rett syndrome There's no cure for Rett syndrome, so treatment focuses on managing the symptoms. Outlook Although some people with Rett syndrome may retain a degree of hand control, walking ability and communication skills, most will be dependent on hour care throughout their lives. Advice for carers Caring sprcial with Rett syndrome is mentally and physically challenging.

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