Cycle starting again

[Anonymous]

After a terrible 2.5 month battle with an NG tube to get some food into Izzak, we did a “challenge” at his cardiologists’ suggestion. He started taking milk from a bottle immediately (which he really never had done), eating solids and sleeping through the night. I took his tube out 5 days ago. Since then, he has gradually started feeling worse at night, waking once, then twice, and now 5 times crying and wanting to nurse. I am panicking right now – this is EXACTLY what happened at 5mo. He is now almost 9 months, facing another surgery in a month, and I was overjoyed to see him willingly eat. He is only at 15.5lbs, but is healthy-looking. I just had prevacid increased to 15mg daily from 7.5, but am seeing no difference. I am discontinuing his solids today, which he loves, in hopes that I can determine if one of the variety of foods we have given him is causing a problem. Starting with oatmeal only today, nothing in the evening. Can anyone offer other suggestions, or order of foods to reintroduce after 5 days?

[Anonymous]

Are you doing a soy-free oatmeal? (ie: beech-nut)

I would

1) first make sure you’re giving him a ‘safe’ oatmeal he’s tolerating that fine

2) keep in mind that he might be reacting to that (not trying to discourage you but just want to keep that there… my dss were/are intolerant to safe (even gluten-free) oatmeal

3) after he tolerates the oatmeal for 5 days, then consider something else

I would first do an orange veggie- like squash, sweet potato, or carrot (maybe sweet potato since it’s the most flavorful of the bunch, but just fwiw, squash is the most ‘safe’).

Is he doing ok w/ the solutabs? The reason I ask, some dbs (mine included) don’t do well w/ something in them (either the lactose or the colorings/flavorings) & that would cause increased pain, wakings, etc.

Hang in there- you’re doing great!!!

[Anonymous]

Thanks Erin –

I’m using Earth’s Best oatmeal with bmilk. I know it may be the oatmeal, but sure hope it isn’t. He’s doing worse during the day now, not taking as much (he nurses and FINALLY takes a bottle as long as it’s only bmilk), so I’m reluctantly cutting that out as well as of this morning. His weight gain is critical to the success of his heart surgery in February.

He was doing fine on the solutabs before the increase in dose AND the increase in solids. The only change in his milk/formula has been that I’m giving him a 4oz bottle a day of Similac Low Iron instead of Similac Sensitive down the NG tube, because that’s all I can get his to take other than milk. His symptoms are decreasing appetite, back arching and crying when he wakes and now sometimes during the day, red eyes, fussiness, and I can hear repeated swallowing (it was always silent reflux).

My fears are:
1) He is not be able to tolerate ANY solids for awhile, which really help his weight, and he thoroughly enjoyed.
2) That this flare-up will last longer than I can allow and we will have to put the NG tube back in, which will break my heart.
3) That somehow the prevacid is actually making it worse, like if delayed gastric emptying is more the culprit
4) That this is not reflux at all, and I’m losing time trying to control acid.

Is there anything else this can be? How long does a flare-up usually last if it is related to solids, now discontinued?

He did sleep a little better starting at midnight last night, about 10 hours after his last dose of prevacid. I also made sure he got no oatmeal after noon yesterday.

[Anonymous]

I did realize that the first time this started at 5 months, he had just had a heart cath. He was not having any reflux symptoms until about 2 weeks after that. We just had another one on January 4, and here we are in the same boat: short-term improvement, followed by severe reflux.

Any ideas on anesthesia affecting the reflux?

[hellbennt]

no hard evidence, but these babies seem to react (temporarily) to all kinds of stressors…vaccines, viruses, etc…so it’s possible!

[Author]

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