Treatment Options For Rett Syndrome

Rett syndrome occurs after a baby is born. It’s a neurological disorder that happens right after birth and is primarily seen in girls. Rett syndrome is caused by a mutation of the X chromosome on the MECP2 gene. The syndrome causes difficulty in regards to cognitive functioning, learning, sensory, autonomic, emotions, and motor functions. A baby or small child with this disorder have trouble with sensations, mood, heart function, breathing, and eating. The baby appears to normally develop until they reach six to eighteen months of age. At that point, their development slows and stagnates. A blood test indicates when a baby has Rett syndrome. The disorder remains not degenerative.

Physical Therapy

Because a child with Rett syndrome has problems with movement, physical therapy remains a top priority for their treatment. Children with Rett syndrome tend to lose the intentional use of their hands. The severity of Rett syndrome physical problems differs widely amongst children with the syndrome, so each physiotherapy session needs to be specifically designed for the child’s individual needs. A child with this syndrome needs help and practice doing simple tasks like feeding themselves and washing their hands. Once the affected child gains the appropriate physical skills, they don’t lose them as long as the skills remain used routinely.

Other body movement issues are also dealt with during physiotherapy sessions, so the child can gain strength and be the strongest person possible. The key to a child getting the most from their physical therapy is motivation and practice with a professional’s guidance. This course of treatment also prevents health problems such as pain, problems moving intentionally, balance, muscle tightness and stiffness, and keeping the muscles strong enough to work appropriately.

Healthy Nutrition For Rett Syndrome

One of the major obstacles for individuals with Rett syndrome remains proper, healthy nutrition. Children with the syndrome need to have all of the tools necessary for healthy growth possible, and eating good food is a crucial tool in their toolbox of gaining optimal health. A child with Rett syndrome needs to be monitored to receive the proper nutrition and calorie intake level. If the child can’t eat well enough to get this healthy nutrition, they may need supplements to ensure the right ingredients are in their diet.

If feeding becomes a severe problem, communication with the child’s doctor may result in the placement of a feeding tube. A child with Rett syndrome can’t get better if they don’t have enough quality calories to grow and develop the muscles they need to move and become stronger each day. A nutritionist becomes a parent’s best friend when it comes to giving their child the best food possible to attain the highest mental and physical development for their child.

Speech Therapy

Speech therapy is used to enhance a child’s independent communication skills. Some children with Rett syndrome can speak and develop their language skills, whereas others need to use gestures or devices to communicate effectively. In today’s world, there are many communication aids available that help children express themselves accurately and with a minimum of frustration. One bit of information many individuals don’t understand is speech therapy does more than merely helping patients communicate.

In the case of children with Rett syndrome, speech therapy can also improve and manage feeding issues such as drinking, eating, or swallowing. Children in speech training also learn how to interact, understand, express themselves to, and converse with others. Of course, each speech treatment program remains based on the individual needs of the child being treated.

Behavioral Therapy

Behavior therapy is another crucial step in treating Rett syndrome. This type of treatment improves a Rett syndrome patient’s self-esteem, basic behaviors, and self-control. While a behavioral therapist may treat a child, the parents’ participation and implementation remain the key to modifying their behaviors. For this reason, both parents and the affected child need to attend behavioral therapy sessions to know what to do.

Behavior therapy improves a child’s functioning in school, enables the child to modify and control how they act, and allows the child with Rett syndrome to have meaningful relationships with others. The therapist and parents also need to work together with the child to evaluate and be flexible with some of the behavior modifications that they use. When looking for a behavioral therapy plan for use with a child, structure and positive methods should work well and enhance the child’s development.

Occupational Therapy

Occupational therapy for Rett syndrome patients includes developing skills to help the child develop and be more functional and comfortable. It may even lengthen the life of the child with the disorder. During the early stages of the disorder, an occupational therapist helps a Rett syndrome patient come closer to reaching developmental milestones appropriate for their age. Next is the rapid destruction stage, during which the individual with Rett syndrome begins to lose motor and communication skills. Therapeutic play activities encourage these skills to develop in a fun way.

A part of this therapy includes practice processing sensory information, which, in turn, diminishes self-stimulation behaviors the child may have. Eventually the child’s physical skills plateau. The therapist provides a play or other activities to keep her skills at a standard level and to prevent muscle contractures or other deformities. They also encourage the child to communicate using a variety of methods. And during the final stage of Retts, activities are devised to keep a child’s motor skills at their optimum levels with assistance if necessary.