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Retts Syndrome

A neurological development disorder, seen most commonly in girls, is known as Rett’s Syndrome.  Rett’s Syndrome is categorized by the normal development of the brain followed by a slower development.  A loss of coordination, a loss of hand use all together, distinguishable hand movements, having issues with walking, intellectual disabilities, and even seizures.  The individual who discovered this particular syndrome is known as Dr. Andreas Rett from Austria, who had first brought this disorder into the medical world through a journal article in1966.  This disorder was not recognized until 1983 when a Swedish researcher, Dr. Bengt Hagberg, also wrote an article.

Those children who are diagnosed with Rett’s Syndrome generally exhibit symptoms similar to those of the autistic child.  Some of the most common symptoms found in children who have Rett’s Syndrome include: walking on toes, issues with sleeping, having a difficult time chewing, grinding of the teeth, growth is slowed, seizures, hyperventilation, apnea, cognitive disabilities as well as a wide-based gait.

With Rett’s Syndrome there are four stages known to the disorder:

The first stage, known as an early onset, starts between the ages of 6 and 18 months old.  Many doctors overlook this stage due to the disorder being vague at times.  Both parents and doctors may not instantaneously notice the subtle slowing of developmental happenings with the child.  Whether it is less eye contact from the infant or they seem to be uninterested in their toys, it is not enough to draw attention to this particular diagnosis.  This particular stage generally lasts only a few months but is able to continue on for more than one year.

Stage two is the destructive stage, known as the rapid destructive stage.  This generally takes place between ages 1 and 4 lasting for any number of weeks or months.  The signs of this stage or generally loss of movement in hands or in the child’s language skills; hand gestures such as clapping, tapping, or washing, then moving hands to their mouth are key points at the early stages.

Stage three is the plateau stage, also known as the pseudo-stationary stage.  This generally occurs between the ages of 2 and 10, sometimes lasing for many years.  Both motor issues as well as seizures are prominent during this particular stage.  On the other hand, there will be a significant improvement in behavior such as less irritability, crying, or autism-like symptoms.  Many with Rett’s Syndrome can or will remain in this stage for most of their lives.

Stage four is known as the motor deterioration stage lasting for years or even decades.  The curving of the spine, even more reduced mobility, weak muscles, spasticity, or rigidity are all signs and symptoms of this fourth  stage.

There is currently no cure for Rett’s Syndrome, and is generally treated by focusing on the management of the symptoms exhibited by the individual.  Generally there is medication needed for breathing, as well as regular monitoring for other possible illnesses such as scoliosis and heart abnormalities.  Despite how difficult it may be at times, individuals with Rett’s Syndrome can live  into their late 40’s, 50’s, and even beyond with this disorder.