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Old 02-12-2013, 04:24 PM   #1
7 for now
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My youngest was born at 30 weeks. He is almost 3 months old now. He had a swallow study at 5 weeks that showed severe reflux. He does not spit up though it just comes up o his larynx and goes back down. He does not aspirate either.

He also had his upper left live of his lung removed at 6 weeks old because he had congenital lobar emphysema. They thought all the pressure from the hyperinflated lung made the reflux so bad. Everything was shifted over to the right his lung was so big.

They talked about doing a fundoplication plus the G tube after his lung surgery but decided to wait an see how it was affected by removing that lung lobe that was so big.

He is still hurting from reflux. He does alright until about 3 pm then he cries, wants to eat, then when milk comes out of the bottle he screams as spurs it out while arching his back. He is on 15 mg of Zantac 3 times a day. But it does not help much. We also tried Prevacid and he stopped sleeping after about a week on that so back to Zantac.

He is only eating about 410-430 Mls a day which is not enough. He is on a 24 cal/oz formula. He eats only 45-55 Mls at a time. He flat refuses more, screaming ad spitting it out. I weighed him last Friday and he had gained 8 ounces over 2 weeks, so about 4oz a week. I am going to weigh him again next week.

We have a ped. GI appt on March 7th but is there anything else I can do before then. We have to drive 350 miles to it. He will also have his follow up appt with the surgeon and pulmonologist at that time.

I have been giving him 5 Mls of organic gripe water in the evenings and that helps the screaming but not eating. I have his crib at an angle, I hold him up on my chest after feeds. He also refuses to eat after I burp him. He gets really wiggly and grunty and I will burp him and he won't eat after anymore bottle after that.

In the NICU thy wanted him to eat a minimum of 416 Mls a day. They said that was bare minimum for his weight for hydration but not weight gain. So they upped him to the 24 cal formula. He was 7-15, naked, at discharge on Jan 17. He was 9-4 on Feb 8, but that is with a dry diaper on. He is not dehydrated, he still pees and poos fine.

I can't stand seeing him like this. What else can I do to help him. At one point he was on a NJ tube his reflux was so bad but after surgery they went back to PO feeds. He has a slight oral aversion also. You can't just put the bottle in his mouth or he gags, you have to put t on his lips and let him take it in.

We had an EI eval last week an they said they wished he had a stronger suck. So we will be working with an OT. I have changed his nipples to level 2 because it is easier for him. He was not even able to bottlefeed until he was 7 weeks old and I am sure that affected him. He could not breathe well enough to suck a bottle. He still can't suck, swallow, and breathe. He sucks, sucks, sucks, then pauses And huffs and puffs then repeats. The OT at the hospital said it was an immature suck.

At this point I would be relieved I get a tube for him. Are there any other options besides that?

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Last edited by 7 for now; 02-12-2013 at 04:29 PM.
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Old 02-12-2013, 06:59 PM   #2
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Re: Reflux help....

You need a feeding team. Usually, it is a children's hospital team that has GI, Dev. Peds, ST, OT, PT, psych, and a couple more NPs thrown in. Everyone evalutates kiddo and works on a plan to get kiddo eating. DS is 3 and goes every summer for a week to feeding boot camp at the chidlren's hospital, then has weekly feeding therapy locally, in addition to OT, PT, and ST.

I would ask GI if you can have a developmental pediatrics referral too. IMO, they do much better at handling eating issues than GI because they look at the big picture, and not just the GI system.

Are you a member of parent-2-parent.com or the Facebook group Pediatric Feeding Disorders Connecting the Dots?
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