Infants and young children with Tay-Sachs or Sandhoff disease may require nappies throughout their life. In older children and adults, as the diseases progress, it is likely that they will no longer realise when they need to go to the toilet. This can be very embarrassing and frustrating for them. It is important to introduce pads and other supports sensitively, and your care and support network will be able to help you with this.
Regular bowel habits are important for health and wellbeing. Normal bowel and bladder habits vary from person to person, and changes in health, diet or exercise can make a difference. Constipation may be a problem for many reasons, including lack of physical movement, less fluids or fibre, as a side effect of some medications, or as a symptom of the disease as gut movement is affected.
An allied health professional, such as a Physiotherapist, can provide advice on exercises that may help, and a Dietitian can provide advice regarding diet. Your specialist, palliative care team, GP or nurse may be able to provide advice regarding medications.
Sometimes it can be difficult to find nappies for older children, and they can be expensive. You may also wish to discuss with your NDIS Local Area Coordinator (LAC), about whether you can access financial assistance for continence supplies, such as pads and nappies.