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Post by vickia on Apr 25, 2007 13:51:27 GMT
Thomas' speech and language therapist came out to see us yesterday so that she could do a swallowing assessment on him. I asked for her to come out cos he won't tolerate lumps in his food but she was actually more concerned about his drinking. Apparently a baby should suck, swallow, breath, suck, swallow breath. Thomas hasn't quite got the hang of this and does all 3 at once! lol. We have got to get a prescription for 'Thick and Easy' so we can thicken Thomas' milk and juice because he's actually inhaling it. This is apparently why Thomas is constantly ruttly and has reoccuring chest infections! (although no-one has realised this before! its only taken 10 months.........)
The S/LT is reffering Thomas for an xray flouroscopy where they will feed Thomas barium and then xray him to see what he's swallowing is like! I feel a bit fed up by all this cos it just seems like another problem to add to his ever growing list!!
Has anyone else had experience of this? I don't know of any other children with Downs that have to have thick and easy and I'm worried that it may be something he'll need forever!
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lynnie
Junior Member
Posts: 164
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Post by lynnie on Apr 25, 2007 19:53:26 GMT
Aaron had a videofluoroscopy done when he was about a year and a half. He also had Thick and Easy in his bottles.
The Thick and Easy doesn't change the taste of their food at all, and it is just a powder that you mix in with it, depending how thick you want it! We then just made the holes in his bottles teats a bit bigger.
Aaron had recurrent chest infections for the first year of his life, after getting bronchiolitis at 5 weeks old, and his S/LT wanted to make sure that his food wasn't going down the wrong tube.
The procedure is really simple. They just mix a little of the barium into his food and take a moving x-ray of him swallowing it.
Thankfully Aaron's swallowing was fine, and that showed us that he just had a bad chest!!!
Because Aarons videofluoroscopy was fine, he had to get a bronchoscopy (camera down into his lungs) which showed that he had a narrowing of the tube to his top right part of his lung but they are not sure if it is scarring due to continuous infections or if it is just something he was born with.
Hope this helps,
Lynne x
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Post by njcorbett on Apr 26, 2007 14:33:50 GMT
Lucy had Thick and Easy too. She was fed liquids by NG tube until just before xmas when we managed to get her off it. Out SALT regularly checks Lucy for her eating and drinking skills as part of our appointments with her in case her chest infections are due to her inhaling food or drink.
Don't worry about Thomas needing Thick & Easy forever, Lucy doesn't use it at all now.
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Post by Jojo on Apr 30, 2007 20:07:23 GMT
Haven't had any of this for Lisa, but I just wanted to say good luck for his appointment.
Lisa does have thickened drinks if it's from her doidy cup, but is ok with a medium flow bottle for her milk and juice (I know she shouldn't really have a bottle at 2, but in these hot times, it's the easiest way to get fluids into her.
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Post by njcorbett on Apr 30, 2007 20:14:36 GMT
Lucy still has her bottle too. I'm being hard and have stopped her morning one today. As long as the wet nappies keep coming we'll be ok. Well that will probably last until she picks up another bug and I'm desperate to get fluids in and I'll revert to the bottle again (and ice cream and ice lollies and angel delight) it's amazing how you can get fluids in without them even noticing.
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