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	EATING AND GASTROSTOMIES
Hi there. We have a daughter Katie nearly 5 who has SMA2. We have been struggling for over a year now to get her weight up but it seems to have remained at the same level for that length of time now and we are being seriously advised by the H/smith to have a gastrostomy fitted and to give Katie a slow trickle feed at night to top up her calories. Can anyone let me know their experiences either bad or good? I know there are so many pros but I am also concerned about the negatives and whether either we or Katie will then just 'not bother' or 'give up' at least trying to eat proper food and meals. Sorry but I don't want her tube feeding to be a 'cop-out' of the normal life which we want her to have as much as possible. Thanks.
Posted: Wed Nov 2, 2005 10:04 am

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Steph

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Re: EATING AND GASTROSTOMIES

hello, my experience is that people use the gastrostomy to top up calorific intake. Eating,the enjoyment of food will continue as gastrostomy feeding is no substitute for the enjoyment and pleasure gained through eating normally. It isn't a cop out more like a back up. Good nutrition and the energy reserves of adequate body fat enables greater resilliance against ill health.

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Tue Nov 15, 2005 10:14 am

Chris at JTSMA

Re: EATING AND GASTROSTOMIES

How much does katie weigh? amay son has been thin all his life and although it doesnt look healthy it actually is healthier for him as the heavier you are , more of a burden the weight is on the muscles. He was 10 months old when diagnosed with type 1 back in 1980, I was told he wouldnt live pass the age of 2, He is 28 now!
I think they typed him wrong. My son bruce has been eating regualr foods since hes had his first teeth. He just now within the past 7 mos. having issues with lifting the utensils to his mouth. He wighs about 72 lbs now but at age 5 he was not more than 40 lbs

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Fri Feb 29, 2008 5:04 am

Rosserbunch

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