Rett Syndrome

From the moment they’re born, you’re obsessed with teaching and watching your baby grow. Whether it’s taking their first steps or learning how to communicate, it can be exciting to see their progress. But, if your child suddenly seems to be regressing in their development, it can be alarming. What is causing the regression? Can you stop it from getting worse? In the case of Rett syndrome, you may not be able to cure your child, but you can provide relief from the disorder. What is Rett syndrome, and how can you treat your child?

What is Rett syndrome?

Rett syndrome is a rare neurological disorder that affects brain development primarily in girls. Your daughter will develop symptoms within the first two years of her life, with the first symptoms potentially occurring as early as six months. The disorder may impact how your child develops — impacting hand movements and language skills.

Causes of Rett Syndrome

While the exact cause of Rett syndrome is unknown, most girls with the disorder have a mutation on their X chromosome. Although genetic, parents with the gene cannot pass it to their children. Instead, it occurs as a chance mutation within the DNA. There is currently no known cure for Rett syndrome, and the symptoms tend to parallel those of other genetic conditions.

The best way to determine if your daughter has Rett syndrome is to get her tested by a doctor. Once it’s determined that she has this rare neurological disorder, you can begin treatment plans and learning what to do to help your child grow.

Symptoms of Rett Syndrome

Rett syndrome is a lifelong condition, and the symptoms won’t improve over time. But, they can worsen slowly or not change at all. The most common include:

Slowed growth — especially the brain, resulting in a small head size
Problems with hand movements
Limited language skills
Issues with muscles and coordination
Trouble breathing
Sleep disturbances
Scoliosis
Seizures

Rett Syndrome Treatments

While there is no cure for Rett syndrome, treatments can significantly help improve the condition. In some cases, your daughter may be able to attend school to help improve social interactions. By beginning treatments early, you can help improve the quality of life for your child. The most common treatment options include:

Standard medical care and medication — to help treat movement problems
Physical therapy
Speech therapy
Occupational therapy
Behavioral therapy
Good nutrition
Supportive services

Caring for a Child with Rett Syndrome

Caring for a child is a full-time job, but caring for a child with Rett syndrome can often feel overwhelming — especially if you have other children in the home. You don’t have to care for your child alone. Find a support system through friends and family, and remember to take time for yourself.

You may find that a home health care provider is a better option for you and your family. A caregiver provides 24/7 support to ensure your daughter is getting everything she needs to grow and develop. From sitting with her at school to watching over her at night, a pediatric home caregiver may be the new family member you need to help with your child. Your caregiver offers quality care and assists your daily activities — from helping your child get ready in the morning or fixing meals for her throughout the day to freeing up your time for errands and giving attention to your other children.

Contact Sonas for Home Health Care in Florida

It can be hard to balance your time between work, home, and caring for a child who has Rett syndrome. That’s why our team of skilled professionals at Sonas Home Health are here to help.

Our home care services offer support in the comfort of your home. We refer loving and competent caregivers to provide customized care for families — from a few hours a day to around-the-clock supervision. Contact us directly to speak with a home health care professional or request a free in-home assessment. Together we can determine the best plan of action to keep your loved ones happy and healthy.

If you or a loved one are considering Pediatric Home Health Care Services in Florida, contact the caring staff at Sonas Home Health Care. Call today at (888) 592-5855.

Jillian Miller BSN, RN

Director of Nursing at Sonas Home Health Care

This blog was reviewed by Jillian Miller BSN, RN — Director of Nursing for Sonas Home Health Care’s Tampa Bay market — for clinical accuracy. Jillian Miller has been a nurse for 16 years — working primarily in pediatrics. She believes the best part of working with the pediatric population is when you see smiles from clients when you first enter the room. She loves seeing the difference you can make in families’ lives while providing the best care possible for them.