Rett is a rare genetic neurological disorder; only 1 in 10,000 girl births result in the syndrome. However, your child was diagnosed with Rett, and you want to know the next steps for helping your child. Here’s what you need to know.
Educate yourself about Rett Syndrome to know what your family is dealing with. The more you know, the better.
Here are some facts you should know first:
Rett Syndrome is a rare genetic neurological disorder that is most common in girls. Although it is rarer in boys, it is more devastating to them. Some symptoms of Rett include loss of speech, involuntary hand movements, loss of muscle tone, seizures, and breathing issues.
You can learn more about Rett by talking to your child’s doctor, thorough research, and joining support groups.
Join a Support Group
You can join a support group with other families struggling with Rett or a support group for caregivers of various other disabilities. You can join our Family Support Group Here.
It’s good to get support from people that are in similar situations so that you can help each other. You might find some groups through the Meetup App or Facebook! Some benefits of support groups include:
- Feel less lonely or judged
- Reduce stress, depression, or anxiety
- Improve coping skills
- Get answers to complicated questions
- Staying motivated
- Improve understanding of Rett syndrome
- Learn about the resources available to you
However, you still have to be wary and be sure to take the advice found in support groups lightly. Always ask your Doctor before trying something you heard in a support group. Some other drawbacks might be:
- Rude group members
- Lack of confidentiality
- Unethical or untrue medical advice
- Competitive Comparisons (who’s situation is worse?)
Get Connected With a Non-Profit
Get connected with a Non–profit such as Northwest Rett Syndrome Association (NWRSA)! NWRSA was founded in the early 1980s by parents and individuals who recognized the need for a support group.
We offer connection, education, and advocacy for families impacted by Rett Syndrome.
We support families in the Northwest region, including Oregon, Alaska, Idaho, Washington, and British Columbia. Our Non-profit accepts donations that go towards events and resources that are available to our members.
On our website, you can find informational articles, other websites supporting the Rett family agenda, and Doctors specializing in Rett Syndrome in the Pacific Northwest region.
Find Doctors That Specialize With Rett Syndrome
Children with Rett Syndrome need to see multiple specialists in order to track progress and regression and help manage symptoms. Some specialists you need to look for when your child has Rett are:
Neurology. Treating and diagnosing Rett Syndrome.
Physical Therapy (PT) or Occupational Therapy (OT). Physical therapy for children with Rett can help maintain motor skills, prevent deformities, alleviate discomfort, and improve independence.
Speech Pathology. Speech pathology therapy will help with language stimulation, development of language skills, visual and auditory skills, and cognitive skills.
Cardiology. Because heart problems worsen with time in Rett syndrome, constant heart monitoring of heart function is mandatory in treating Rett.
There are many Rett Clinics around the US available to help your family. You can find a compiled list here.
Children with Rett need a lot of attention and help. Chances are you’ll become a full-time caretaker of your child. While this may be a difficult transition period, don’t be afraid to ask for help, and remember that connection with other families will help, but always do what is best for your child.