update on Aiden

[Anonymous]

Ph probe(on meds) showed 338 times in 20 hours…he did have a gastric empty study, slow end of normal (on meds). He is more of a silent refluxer. He did have some spit ups but nothing severe just a few with each feed. He would just start to go crazy with each feed and arch his back and cry and stiffen up after 1-2 ounces….We are working with OT on the suck/swallow problems. The problems did not start until he was 5weeks old or so. They are thinking he “learned” to eat wrong to help with the reflux to feel better….

THe neonatalogist wants him to have surgery, the surgeons say no becasue he is gaining weight with a gavage tube….that is where we sit today 11 days in NICU and counting….

deb

[Anonymous]

Oh no, Deb! I’m so sorry to hear that his reflux is so bad! I can’t believe he had that many episodes on meds! Are they going to up his dose based on the probe results since the meds obviously aren’t controlling the acid? Also, have they been giving the meds properly in the hospital. Again, I’m so sorry and hope that the team at the hospital can help him.

[Anonymous]

THey will not up his meds…the are on their max dose. 1.5mg/kg/ 2x/day of prevacid. I tried to get them to try the MArci kids doses but they just flat out say thtat is too much. HE is also on their max dose of Reglan. They are giving them appropriately after we complained about them being less effective if given with the food instead of 30 minutes before…They are arguing with surgery as to do it or not….

[Anonymous]

deb, what was the overall percentage of your son’s reflux—this is more significant than the number of reflux episodes. also, did he have very many reflux episodes that were longer than 5-7 minutes. this is also more significant that the overall number of episodes. did they do an endoscopy on him? does he have much esophageal damage?

my daughter had a fundoplication/hiatal hernia repair just before she turned 10 months old. she has had no complications from her surgery.

[Author]

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