Rett Syndrome Prognosis and Stages


Rett syndrome is a rare disorder that slows down growth, especially amongst females. The start of the disorder might be normal during the first few months after birth, but it is followed by a slower development, which affects hand movements, walking and speech difficulties along with a slow head or brain growth. The onset of the symptoms or the neurodevelopmental disorder varies between children, and one might confuse the early signs with autism.


Stages of Rett Syndrome

Rett syndrome diagnosis and prognosis can be divided into four phases, and each stage has its symptoms. They are as follows:


Stage 1 - Diagnosing Rett syndrome

Stage 1 is where the symptoms of Rett syndrome are gradually becoming more visible. It can be present in babies between 6-18 months of age. This is the most crucial stage as many doctors and parents tend to ignore the changes because they consider it a part of the development stage. However, the signs might include loss of interest in toys or surroundings, little or no eye contact, difficulty in sitting or crawling, etc. The symptoms during the first stage can last for a year, or they might not be present after a few months.


Stage 2 - Between 1-4 years of age

Stage 2 is the most destructive stage and is likely to be triggered between 1-4 years of age. During this stage, the infant is unable to make useful hand movements or utter meaningful words. The hand movements might be repetitive as the child tends to find comfort in that particular hand skill. There are increased episodes of their hand in the mouth. Furthermore, breathing difficulties and changes in breathing patterns might also be visible during this stage. As the child is developing during this stage, therefore, one might notice slow head and brain growth.


Stage 3 - Starts from 2-10 years

Stage 3 is also known as the pseudo-stationary stage. This stage starts from 2-10 years of age, but it can last a lifetime. The child will experience problems like apraxia, i.e., being unable to execute motor functions like body movement, speech, etc. In some cases, girls might go through seizures as well, whereas there are cases in which the condition tends to improve. For instance, behavior, communication, and attention span might improve in some girls. However, some girls are stuck in stage 3 for the rest of their life.


Stage 4 - Motor deterioration

Stage 4 is when the condition starts to deteriorate. The most significant features include weakness of muscles, decreased mobility, the abnormal posture of the arms and legs. In rare cases, girls who were walking can stop walking completely. However, hand or communication skills stay the same without any further improvement.

Rett syndrome is a severe disorder, and therefore any changes in the infant should be noticed during an early stage. There is no cure for this syndrome, but medicines can improve specific conditions like improving the overall breathing patterns of the baby. The patients who tend to suffer through a Rett Syndrome can live up to 50 years.

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