laryngomalacia and feeding questions

my son was diagnosis with laryngomalacia and had surgery to correct the one side. we had a wonderful week post with him finally enjoying eating and not hearing him breathe from another room....well it's been two weeks and his breathing is getting bad and we are having problems feeding him again. he just doesn't want to eat!!! i know this is a side effect of the laryngomalacia and his ENT wants to do surgery on the other side in two weeks..but does anyone have any suggestions for helping him to eat. i was wondering about an NG tube until the surgery just to give him what he doesn't take by mouth. kind of like when he was in the NICU when he wouldn;t finish a feed. i'm a nurse and would have no problem managing it but i am just wondering could this set him back with his swallowing ability??? i'm looking for any ways that can make the next two weeks easier on him.

any suggestions would be wonderful...thanks he is 3months 6weeks adjusted.

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Are you thickening his feeds? My baby has laryngomalacia and tracheomalacia and he was refusing to eat for a couple of months. It was awful--he would "honk" and scream and arch. We had a swallow study that showed he was aspirating so we started thickening his feeds. The thickening wasn't necessarily supposed to help the malacia but it totally did. He is eating way better and his breathing is so much better. In between feeds, he is still pretty loud but not nearly like it was.

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not sure if that will work for him. he is so miserable most of the time when i try and feed him. he does the arching of his back and cries and cries sometimes. i think his reflux makes it worse too. he is on zantac twice a day for it. i found that faster nipple help so he doesn't have to work as hard. it's a struggle. i keep telling myself two more weeks and hopefully his surgery will help. the first one did but they only did the one side. so doing the other one will hopefully resolve this as much as possible.

thanks for the advice. just in case though how do you mix the cereal in to the formula? ration of cereal to formula? i will try anything at this point.

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I wouldn't use cereal. If they are on breastmilk, you will need to order a thickener called Simply Thick (www.simplythick.com). You use one packet per 4 ozs of breastmilk. You can't use any other thickener (incl. cereal) because breastmilk enzymes will break them down and it won't work.

If they are on formula, go to the drugstore and get a can of Thick-It. You add 2 tbs of the powder per 4 ozs to thicken.

The reflux is likely worsening it--both of my boys also have that. Have your kids seen a GI doc? My older son is on Prevacid and my baby (4 mos) is on Zantac. The Zantac doesn't seem to be doing anything for him. We've seen an AMAZING difference in his feeds since we started thickening but he is still doing a lot of arching and crying between feeds (and during feeds to some degree but it is much better). My older son is having a Nissen on Monday to address his reflux and they haven't switched the baby to Prevacid yet because he is scheduled for a pH probe in April.

Have they done a swallow study on your kids? The malacia can affect the eppiglottis, which means they may be aspirating, which would be causing the pain while feeding.

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i just read this and i will try the thickener. i'm at work tonight (i'm a nurse) and i will see if we have some there. no swallow study as of yet. today is the first day i am going to try zantac 3 times a day instead of two.

i pray that the nissen goes well. i take care of adults after they have those and i have seen great results so fingers crossed. no gi doctor yet either. his ENT has been addressing the reflux also. he is the one that upped his dose of zantac. he deals with feeding issues too. he said it's all related to the malacia and that we are gonna have to tough it out till he can do the next surgery. just sucks having to wait.

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