In later stages, weakness of the throat muscles can lead to swallowing problems (dysphagia), further accentuating nutritional issues. This can often come on very gradually, meaning it can be difficult to spot.
- Clinical and X-ray tests of swallowing are necessary when there are clinical indicators of possible aspiration (getting food in the windpipe) and poor movement of the swallowing muscles (food feels like it is getting stuck in the throat). Such indicators include unintentional weight loss of 10% or more, or insufficient weight gain in growing children, prolonged meal times (>30 minutes) or mealtimes accompanied by fatigue, drooling, coughing or choking.
- Pneumonia caused by fluid going down into the lungs (aspiration pneumonia), unexplained decline in pulmonary function, or fever of unknown origin may be signs of swallowing problems necessitating assessment.
- In case of swallowing problems, a Speech Language Therapist (SLT) should be involved to deliver an individualised treatment plan. The aim is to preserve good swallowing function.
- Gastric tube placement should be offered when efforts to maintain weight and fluid intake by mouth do not help enough. Potential risks and benefits of the procedure should be discussed carefully. A gastrostomy may be placed by endoscopic or open surgery, taking into account anaesthetic considerations and family and personal preference. A feeding tube provided at the right time can relieve a lot of pressure from trying to eat enough. Provided the swallowing muscles are OK, having a feeding tube doesn’t mean you can’t still eat the food you want to – just that you don’t have to rely on mealtimes to get the calories and other nutrients you need so you can enjoy the food more.