Parents of children with ASXL-related disorders share their perspectives on toilet training and managing urinary health. These include strategies for working toward independence with toileting and managing more complex challenges related to urinary health including infections, kidney disease, and catheterization. Panelists include:
- Laura Badmaev, Bohring-Opitz Syndrome parent
- Sheri Bermejo, Bohring-Opitz Syndrome parent
- Alyssa Berry, Bainbridge-Ropers Syndrome parent
- Sarah Scott, Shashi-Pena Syndrome parent
This presentation was given at the 2022 ASXL Family Conference.
Published: April 2023
The following informational resources are provided by panelist Laura Badmaev:
Definitions and descriptions of related conditions, tests, and interventions
- Neurogenic bladder
- Chronic kidney disease
- Urodynamics and EMG (needle electromyography) test
- Voiding cystourethrogram (VCUG) test
- Urinary catheter types
Tools and resources for management
- Pelvic physical therapy (PT)
- Therapressure brushes
- Belly massager
- Anti-inflammatory food diet and pyramid
Additional related resources include:
The information presented here is for educational purposes only. This information is not medical advice and should not be treated as such. You should always talk to your or your family member’s health care professionals for diagnosis and treatment, including information regarding which drugs or treatment may be appropriate for you or your family member. We do not represent or warrant that any particular treatment is safe, appropriate or effective for you or your family member. In the event of a medical emergency, you should contact your doctor immediately or call your local emergency service.
