MyRettTeam

It sounds like the hand-mouthing your loved one experiences has become more frequent and intense over time. This is something many MyRettTeam members have noticed too, and it's completely… read more

It sounds like the hand-mouthing your loved one experiences has become more frequent and intense over time. This is something many MyRettTeam members have noticed too, and it's completely understandable to want to make sense of it.

Hand-mouthing is one of the recognized movement types in Rett syndrome, seen in roughly half of those with the condition. These movements are involuntary — they come from changes in how the brain controls movement, not from habit or choice. The main concern with increased hand-mouthing is the physical toll it can take. Things to watch for include:

- Skin breakdown — Saliva combined with constant movement can cause soft, irritated, or broken skin
- Blisters or discoloration on the hands
- Self-biting injuries — These should be checked regularly

There are some practical strategies that can help manage this:

- Protective gloves to shield irritated skin
- Elbow splints to temporarily reduce the movements during focused activities or to allow skin to heal
- Sensory supports like weighted items or textured materials, which some individuals respond well to
- Hydrotherapy — Warm water sessions have shown some benefit in research

It's worth raising the increase in frequency with her care team, as they can tailor a management plan to her specific needs.

MyRettTeam

Are there recommended rehabilitation centers or programs for someone with Rett syndrome?

Finding the right rehabilitation program for someone with Rett syndrome can make a significant difference in… read more

Are there recommended rehabilitation centers or programs for someone with Rett syndrome?

Finding the right rehabilitation program for someone with Rett syndrome can make a significant difference in quality of life. While the search results don't provide specific rehabilitation center recommendations, here are some helpful approaches to finding appropriate care:

Consider these types of specialized programs:
- Pediatric rehabilitation centers with experience in neurological conditions
- Multidisciplinary clinics that offer physical, occupational, and speech therapy under one roof
- Centers affiliated with Rett syndrome research or specialty clinics
- Programs that specifically address motor skills, communication, and daily living activities

When evaluating rehab options, look for:
- Therapists experienced with nonverbal communication and assistive technology
- Staff trained in managing seizures and other Rett-specific challenges
- Programs that can coordinate care across multiple therapy types
- Facilities that involve families in the treatment process

Many families on MyRettTeam share their experiences with different rehabilitation programs. Connecting with other members in your geographic area might help you discover local resources that have worked well for others. Your neurologist or Rett syndrome specialist may also have specific recommendations based on your location and individual needs.

Would you like guidance on what questions to ask when evaluating rehabilitation programs?