Post by vickia on May 14, 2008 8:52:29 GMT
Thomas had to go for a repeat video flouroscopy (swallowing assessment) yesterday because even though we thicken his drinks with think & easy he sounds REALLY rattly when he drinks. Also when he eats yoghurts and fruit purees and things.
The test showed that Thomas is aspirating (breathing in) much more than was first though. We have now been told to thicken EVERYTHING up so that it is like very thick custard. This is really hard with drinks though cos it means that Thomas has to work so much harder as sucking his drink thru his cup.
They have also asked us to think about a gastrostomy tube so that he will not need to feed or drink orally which would eliminate the problem. The idea of this to me though is absolutely devastating. We have worked soooo hard to get Thomas onto solid foods over the past 18 months and now to think that all that could be taken away really upsets me. Thomas is a good eater ( of things that he likes!! he will not touch ANY kind of finger food!) and a really good weight. I was originlly told that most kids grow out of the swallowing problem once they get more mobile but Thomas is now crawling and pulling to standing and his problem had got worse!
I spent all yesterday morning in tears about this. I'm probably just being silly but it just seems like another step backwards. I know Thomas will never be 'normal' but I want him to do all the things that other kids his age do and eating and drinking is such a massive part of that.
Sorry to ramble on but I just needed to get it off my chest.
Do any of you guys know of other kids with Downs that have swallowing problems? I have no idea how common it is?
Thanks for reading.
Vicki xx
The test showed that Thomas is aspirating (breathing in) much more than was first though. We have now been told to thicken EVERYTHING up so that it is like very thick custard. This is really hard with drinks though cos it means that Thomas has to work so much harder as sucking his drink thru his cup.
They have also asked us to think about a gastrostomy tube so that he will not need to feed or drink orally which would eliminate the problem. The idea of this to me though is absolutely devastating. We have worked soooo hard to get Thomas onto solid foods over the past 18 months and now to think that all that could be taken away really upsets me. Thomas is a good eater ( of things that he likes!! he will not touch ANY kind of finger food!) and a really good weight. I was originlly told that most kids grow out of the swallowing problem once they get more mobile but Thomas is now crawling and pulling to standing and his problem had got worse!
I spent all yesterday morning in tears about this. I'm probably just being silly but it just seems like another step backwards. I know Thomas will never be 'normal' but I want him to do all the things that other kids his age do and eating and drinking is such a massive part of that.
Sorry to ramble on but I just needed to get it off my chest.
Do any of you guys know of other kids with Downs that have swallowing problems? I have no idea how common it is?
Thanks for reading.
Vicki xx