LOL Use Claires addy for it... Mine is wrong :P

My DD has DS & a Complete AVSD (Among other things) she was NG fed from 12 weeks to 12 months, and then on and off. She is nearly 3 now and eats anything and everything.

Best advice I can give is concentrate on weaning and top up with tube feeds, speak to dietitian though for advice on high cal food. My DD never regained the suck reflex, nor did she ever get the taste for milk, still won't drink milk now... LOL

Pop along to www.upsfordowns.co.uk there are LOADS of us on there XX

Hi, my son also has ds and had an avsd which was repaired when he was 6 months. He was only ng tube fed for about the first 10 days when he was in scbu. We were encouraged to give him a dummy while he was being tube fed so he would learn to associate sucking with getting a full tummy. Its a bit different with your little one as he is a bit older but if he will accept solids then I;d carry on with those. You can also try thickener in his drinks to make it easier for him when he drinks from a cup. Your speech therapist should be able to advise you on this. hth xxxx ps. there is a great downs website with lots of parents that can offer advise www.upfordowns.co.uk. There is a mum on there who has just had the same problem with her little boy following surgery xxxx

Many thanks for the advice, we are trying him on a trainer cup that doesn’t have a valve so he doesn’t need to suck. At the moment, he takes a few mouthfuls of water & we’re hoping that if he takes to it he can also have his milk out of it. The main problem is that he doesn’t like a bottle in his mouth as he’s been on the ng tube since he was a month old so as soon as you put the teat in his mouth he starts crying. However, he does seem to like solids so I will try the fruit puree as suggested.

Hiya, my dd also has DS and had a complete AVSD (which was repaired exactly a year ago this week, coincidentally). She was 6mths old when she had the op and I had already started weaning her. I demanded her tube feeds be kept to a minimum when she was in hospital and got he tube taken out as soon as she was back on the ward. That doesn't help you now though.

What I will advise is that, if you're sure he's ready, start the weaning and just keep offering a bottle. You could even skip the bottle altogether and go straight to a cup or beaker. You can make sure a lot of his fluid intake is hidden in his food and pureed fruit really helps in this weather to quench their thirst. Don't let HV's etc bully you into keeping the tube feeding going if you feel that his weight is satisfactory enough to try him without.

If you want to ask anything else please feel free to pm me and best of luck x

I would also ask about the haberman feeder too,as my dd was on one of these bottles as a baby as she had very little sucking power due to a huge cleft palate

i would ask to see a speech and language therapist, and ask about a haberman feeder.

we used these for my daughter whjen she didnt suck.  because of a terrible reflux and massive ftt we did a gastrostomy. it gets the tube off the face as that can put a child off eating sometimes.

jennie

My 5 month old son has lost his sucking reflex & I was wondering if there was anyone who had successfully got their baby back on the bottle? He was diagnosed with AVSD at a month old &, due to weight loss, was being fed via an ng tube until his surgery which was in April. We have been trying for a couple of months to get him back on the bottle but he's forgotten how to suck & is used to being fed via the ng tube.

We've started to wean him as he's nearly 6 months old but would love to have the tube removed as I've forgotten what he looks like without it.

Any advice would be greatly appreciated.