What Can Be Done To Help?
We’ve explained below the help that’s recommended in the Standards of Care for people who experience difficulties with eating and swallowing. Any support you need would be given to you following an assessment. You may be familiar with some or many of these things already, but if you’ve just started to experience difficulties - or if things change for you - talk to your parents and / or a member of your healthcare team as you may need another assessment.
Page last reviewed: August 2021
Next review: August 2022
Regular Appointments With A Dietician
If you’re a 'sitter' or a 'non-sitter', you should be seeing a dietitian regularly to have your growth, weight and diet checked, so that you can discuss and follow advice to keep you healthy.
If you’re a 'walker', you only need to see a dietitian if you’re having weight-related issues, for example if you’re putting on a lot of weight, or not putting on enough weight. A dietitian can explain and work out with you a healthy and comfortable weight for you, and advise on and support you with how to reach and maintain this.
Making Eating Easier
If you’ve had difficulties, your medical team will have talked to you about the best positions for eating and drinking. They may also have suggested foods to avoid because they’re more difficult to chew and swallow and / or pureed food or a semi-solid diet to help with chewing difficulties and reduce the length of mealtimes. Eating can be hard work and take a lot of energy. When drinking, it might be recommended you have thicker liquids, such as milkshakes, to help you avoid aspiration.
Some people have found the following equipment helpful:
- Valved straws which reduce the effort of drinking by keeping the liquid at the top of the straw
- Elbow supports: The Neater mobile arm supports or eating / feeding aid which enables people to use their own movements to feed themselves: https://neater.co.uk/neater-arm-support Other companies are available.
A Swallow Test And Other Ways Of Taking In Food
If you’ve experienced difficulties with swallowing, you’ll have had a swallow test (called a video fluoroscopic swallow study). As well as advice about how food should be prepared for you, you may have had one of these two temporary ways of having food through your nose:
- a nasogastric (NG) tube which then goes into your stomach, or
- a nasojejunal (NJ) tube which goes through the small intestine.
A longer-term option that's recommended, and you may already have, is a gastrostomy tube or PEG endoscopy. This is when a tube is surgically put through the skin and into the stomach.
These additional ways of having food are especially important if you have difficulty putting on weight. If you have one of these tubes but can still swallow safely, it’s still good to have some food by mouth.
Diet And Medication To Help With Constipation
Your medical team may suggest more fluid and fibre in your diet. Medication can also help.
Diet To Help With Bone Health
Another thing that can be an issue for people who are 'non-sitters' and 'sitters' is not being able to use bones and muscles as much as someone who can walk. Standing has several benefits for health (see section on Posture, Movement & Exercise) but if you’re a ‘non-sitter’ you won’t be able to stand and if you’re a ‘sitter’ you’ll find it hard work to stand for a long time, even with support. This makes you more at risk of bone fractures due to what’s called osteoporosis (when bones are weaker and more likely to break).
To help prevent osteoporosis, it’s really important you have enough calcium and vitamin D3 in your diet. If you aren’t sure if you’re getting enough, talk to your parents or medical team. You may get to see a dietician who can give advice.