Tricia

lemen99

Hey Tricia! how are you doing?

Wondered if you had any late night thoughts on this?

 Happy Friday!!

 

Carmela752

Hi there!

I am super bloated and tired of waiting!

I'm sorry that A is back to having issues. Stupid reflux/DGE.

How many milligrams of Emycin is he on? How many times per day?

Are they willing/able to go higher, or is he maxed out? (My epocrates Rx guide says that pediatric patients can take up to 20 mg/kg/day divided into 3 or 4 doses per day, under the GI prokinetic dosing.)

I think you've mentioned that his GI said it before, but the body can basically get used to the drug and you stop responding to it, and increasing the dose may not help, IF that is what is happening.

Do they want to switch him to Reglan if the Emycin isn't working? Or could they use both of them together, and maybe use a lower dose of Reglan? How comfortable are you with that at this point? I personally have not seen adverse effects with it with normal oral dosing, and have just seen it with IV dosing in adults. I think the article I posted at the bottom said the adverse effects are more likely to occur in peds patients who have taken it for over 12 months.

Have they talked about any more testing since the symptoms are coming back?

This article probably doesn't tell you anything new, but thought I'd post it anyway.

https://infantrefluxdisease.com/infant_acid_reflux/gastroparesis.php

I'm really sorry you guys are going through this.

 

lemen99

I bet you are tired of waiting..so patiently :-) 

I think his symptoms are bad since he isn't stooling...hmm.  At least that's my theory. Things get backed up and have nowhere to go but up.

We tried increasing his eryped dosage. He was on 0.5 mL 3x/day and now he's on 0.75 mL 3x/day.  It didn't help I think you're right, I think he is too "used" to it.  The doctor didn't really say that could/would happen (I think it makes sense though), but she also says she doesn't specifically prescribe eryped to help with stooling (it would just be a side effect) but instead is prescribed for DGE.

I'm not huge on the idea of Reglan - the doctor did say we could try it if the eryped wasn't working and we were still having similar issues.  I think we need to do something though!

In the mean time, she's started him on lactulose to hopefully get him to stool.  Maybe that will be enough to help him and he won't need Reglan.  We'll see I guess!

I hate hate hate starting him on yet another medicine.  While I realize the lactulose isn't probably a big deal, he's on so many it's confusing and it's difficult to know what's working and what isn't, and potential side effects, etc.  Ugh. 

 I think if we don't have good results and improvement w/ the lactulose, we'll try Reglan, and if that doesn't help, then she'll start running more tests.  He's already had a lower GI, upper GI, swallow study, and rectal biopsy.  She'd consider a pH study, endoscopy, and maybe another upper GI to look again at the DGE. 

We have an appointment in another 1-2 weeks (I forget the date) to follow-up. Hopefully the lactulose will work, but, if not I hope we make some kind of progress soon!!

 Thanks :-)