How To Cope With Rett Syndrome?

Rett Syndrome is a severe genetic disorder that mainly affects the development of the brain. It almost always occurs in girls and produces symptoms which are similar to autism.

This particular neurological disorder leaves sufferers profoundly disabled, and totally dependent on others throughout their lives.

The gene responsible for Rett syndrome is MECP2 and it is situated on the X chromosome, which is why females are the most common victims of this rare genetic disorder.

However, it can occur in males as well. In most cases, a child born with Rett syndrome is the only sufferer in the family, as the responsible genes are not genetically inherited.

Rett syndrome only affects 1 in 10,000 to 23,000 people world-wide.

Effects of Rett syndrome

Most babies with this rare genetic disorder develop normally at first. But progress in their growth slows when they reach 18 months of age. Over time, children with Rett syndrome experience increasing problems with their motor functions, which can lead to inability to use their limbs, inability to speak, chew and even breathe.

For some children, the symptoms develop quickly, while others develop the disease gradually and symptoms appear over time. The most common symptoms are:

  1. Poor weight gain
  2. Loss of ability to talk or communicate
  3. Seizures can also occur
  4. Bruxism and also swallowing or biting difficulties
  5. Muscle rigidity and the loss of ability to crawl, walk or play

How to help a child with Rett syndrome?

Rett syndrome treatment requires a multi-disciplinary approach, including regular medical care, physical, occupational and speech therapy. Here are a few ways you can help a child with Rett syndrome:

  1. Good nutrition: Proper nutrition is extremely crucial for normal growth of your child as well as for improved mental and social functioning. Few kids with Rett syndrome may respond to high fat and high calorie diet.
  2. Physical and speech therapy: Physical therapy can help your child to maintain walking skills and good balance and flexibility. Speech therapy can improve your child’s non-verbal communication skills.

Proper medication is crucial for children with this rare genetic disorder, which has no known cure. However, the more you know about the condition, the easier it is to improve their quality of life.