feeding troubles for downs syndrome new baby

[Spood]

my 4 week old has an NG tube due to difficulties feeding expressed bottled milk. Can sometimes get into a rythmn and do most of a bottle, but other times chokes and refuses. Any ideas very much appreciated! xxx

Hi Spood - congratulations on your new baby!! :)

My dd has Down Syndrone and had trouble initially feeding, although she wasn't on a NG tube. Do you have neo-natal nurse support? If so, are there able to suggest anything? I remember mine was great at helping to get dd to feed.

Good luck!

Hi spood, my ds has down syndrome and was tube fed in the beginning. This was due to his breathing difficulties and heart and lung probs. Does your dc have problems like this which could be causing this??

Congratulations on your new baby. My ds2 was tubefed for a while because he was floppy and had similar feeding problems to babies who have down syndrome. He used to do the choking thing too and I was just told that sometimes happens, sorry not very helpful. Have you tried talking to an infant feeding specialist? They mainly help with breastfeeding but they have helped me with bottlefeeding too.

My daughter has Downs and was NG fed until a year old. At first we tried bottle feeding too but she choked and aspirated her feed. As the aspirating made her breathing and consequently her heart problems worse we eventually stopped the bottle feeding and just went with the NG tube. She had much fewer chest infections after this.

Also, if your child is sick or seems to get a lot of wind it might be worth talking to your doctor about reflux as this is very common and can make matters worse too. There are medications which can help though and make feeding more comfortable for your baby.

Thanks people. Ellijjtiny that was helpful as it helps stop me panicking and feeling so bad as sometimes I feel like I'm force feeding, especially with some of the faces she pulls! She pulled the NG tube out on Saturday, so am going it alone with bottle! Yes she does have AVSD and we are watching and waiting to make sure she doesnt develop heart failure. Surgery is a definite, but trying not to think too much about that one. Devientenigma how's it going with his heart and lung problems? My man has just fed her without much problem - I'm guessing she's going to be a Daddy's girl! xxx

Hi and congrats. I would think that you should get some expert support and advice. Might be worth to check with a lactation consultant to see if there are experts on this in your area. I have definitely seen leaflets saying "breastfeeding your child with DS" which might have some advice?

Hi spood have they shown you how to hold your dd correctly so you can view all the extremities and face while bottle feeding. You are right not to think about the surgery until it happens. We have been through open heart surgery twice and sooner or later a third, preferably the latter. He's good for him but he has numerous medical, physical and neurological issues which don't help and add to the heart problem. Do you know when surgery will be?? I second the reflux ds had it for years, was on meds to help. Congratulations and I'm loving the daddy's girl, aren't they all.

congrats! dd2 doesn't have ds, but had similar issues with her cp (she was born without a gag and swallow reflex, and so was ng fed initially, and then gradually moved to ebm with associated aspiration and choking etc).

if you don't have one, ask to be referred immediately to a speech and language therapist who is a feeding specialist. ours literally kept me sane for the first two years, and i swear is the only reason that dd2 eats orally now.

fwiw she ended up back in hospital at 6 weeks as she completely stopped feeding, and i've lost count of the number of times i ended up at the gp in tears because she wouldn't/ couldn't feed, but to look at her now you wouldn't believe it. they would just send me to the hospital, as they were terrified of her.

(on the bf side - i managed to get dd2 latched once, at 5 weeks, but her suck was really too weak and i didn't ever manage it again. i had a lot of advice re using supplementer etc, and if you are interested then the nct breastfeeding helpine will put you in touch with very knowledgeable folk about bf with disability and associated issues - but in the end i chose to continue to use a bottle.)

good luck though - you sound as if you are doing very well! (and certainly saner than i was at the same point!)

Congratulations on your new baby, my ds now 3y was also born with DS. Whilst we didn't have any feeding issues I've seen a bottle called a haberman feeder which helps you to control the flow of milk and is recommended for babies with DS.

haberman feeder

I second madwomenintheattic's suggestion of seeing a speech and language therapist. Whilst ds has no feeding issues as a baby we had a nightmare transitioning from bf to cup/bottle and our SALT was fantastic!

Absolutely agree with the importance of Speech and Languauge team involvement and dont let them try any bs about not working with children under 6 months as ours did originally...soon sorted that one out!!
Our ds was ng tube fed due to uncordinated swallow and we worked with SALT until weaning was established. We abandoned bottle feeding at 4 weeks and solely tube fed until 13 weeks when we introduced cup feeding using a thickening agent in his milk and puree with cooled boiled water for juice gradually reducing the thickness until ds could manage liquid. We also started weaning at 13 weeks and our little man has absolutely blossomed since giving him proper food. He is an absolute bruiser now and has no feeding problems at all. Slightly controversial but once ds was taking fluids and milk well we followed the "Graz Approach" and just removed the tube. Little man started showing hunger within 2 days and we knew he'd be fine. He always enjoyed taking his meds orally...strange child!!

HTH

dd2 had slt from birth as well (still does at 7yo )

can i give you a link, too?

www.new-vis.com

it's just a site i found useful when dealing with dd2's feeding issues - the site creator is an american slt i think, it was recommended to me by our lovely slt originally. the 'feed your mind' button takes you to some interesting stuff.

as impress said, a lot of the time thickening the fluids can help as it slows down passage, so the child has longer to get their swallow/ breathe organised. and for later on, dd2 was never any good at mixed consistency stuff (so purees with lumps were out of the question). she weaned from purees on quavers. on the advice of slt, who i thought was crazy. but was actually quite right.

Hello my ds with ds also did a lot of choking and being sick when young. Echo the advice of getting a SALT in now as well as querying the reflux. My ds struggled with the co-ordination as his muscles tired really quickly. Our SALT helped me figure out when his muscles tired and just before he started choking / coughing I would give him a break from the bottle to recover. I did need to be told this because he would carry on guzzling his bottle so I didnt realise that he was getting tired (if that makes sense) and he would try to keep hold of the bottle. We ended up weaning early to try and get enough down him which helped.

By the way CONGRATULATIONS!!!