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These tips have all been sent in by other parents, carers and professionals in the learning disability community. We hope they will give you plenty of ideas to try, but please remember Netbuddy is not responsible for the information provided or any of the activities suggested.
Lavender and tea tree helps
Try adding a couple of drops of lavender and tea tree oil to warm water and bathe the area around a gastrostomy. We've found this to be very effective in preventing any infections
Coke hits the spot!
Coca-a-cola is great for unblocking a peg or mickey button. We drag the clamp daily, but for a big block, coke is great.
Cleaning a gastro tube
If you are struggling to clean a gastro extension tube, especially if you use high calorie feeds or thickener, drag the closed clamp down the length of the tube. This helps to remove stubborn bits of feed that remain in the tube after flushing.
Soothing cream for leaks
>If a leaking gastrostomy is burning the skin, then a burn cream like flamazine will really help and be soothing. It worked far better for us than any barrier cream and an anti-acid helped reduce the acidity of the leakage (be warned the GP may refuse the anti-acid due to price but it is worth the fight).
Sorbasan
If your gastrostomy leaks (my son's pours!) then sorbasan is the most absorbant thing I have found. Basically it's a seaweed dressing and there are lots of different versions and sizes.
Oral tasters
Consider oral tasters for some people who are fed by tube to try to maintain some swallow function.
Bolus aid
You can make your own bolus / kangaroo holder from a music stand with the top section removed and bolt on in its place a "terry clip" of the correct diameter to hold the bolus set. The music stand can be bought for under £10 inc. postage from ebay. It is collapsible and therefore portable
Travel friendly bolus
My son is gastrostomy fed by bolus feeds every 4 hours. To ensure we are able to carry on with everyday life we feed him wherever we go. We try not to let it stop us but found that asking for hot water was a problem for some restaurants. We use a waterproof washbag and keep his bottle of feed, a flush, tubes and a baby bottle warming flask from Mothercare, heat up his milk wherever we are and do the feed. Voila!
Tangle free
You can make a sling to keep a central/Hickman line to sit around the neck. It prevents it from getting tangled up or pulled. We used bright coloured fabric (character to suit) just a simple square pouch again with a little velcro to shut and tape or soft cord for necklace.
Cover ups
All in one surfsuits to keep all the lines and tummy bits undercover when in the pool or on a beach too!
Moisture for dry mouth
John breathes through his mouth and it gets very dry so I use lemon and glycerine mouth swabs that I get from www.henleysmed.com
Silk ng tubes get thumbs up
I am paediatric nurse and we always use silk NG tubes rather than plastic as our policy is to change plastic ones weekly - they do start to disintegrate after this time.
Silk ones are much easier to pass than plastic as they have a guide wire inside which makes them stiffer. You then remove it when the tube is down. I reckon most children say to me silk ones are more comfortable and I really don’t think they are easier to pull out. Many hospitals are reluctant to use silk ones because of the cost but I would strongly recommend them.
Peg works
My daughter had a ng tube for a year. She now has a peg fitted and will be having the mickey button fitted soon. We found the ng tube extremely difficult because she was pulling it out all the time. Now we have had the peg fitted it has made our lives hundred times better.
Infection-free gastronomy
For anyone who has a gastronomy/MicKey button, we have found that the double-sided make up pads from Boots/Tesco etc prevent any infection to the site. We cut to the centre of the pad, put it round the MicKey button and put some micropore tape to hold it round the 'button'. This lifts the button away from the skin and prevents sweating. Since we started this we have had no strep/staff infections. Change the pad once a day. Cheap and effective!
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