GI wants Erythromycin AGAIN

[Anonymous]

Well, went for the follow-up w/the GI today. Lets see what all did he say…

1. Averi has Sandifers

2. She shouldn’t have been taken off e-mycin. Start back up.

3. 30mg prevacid WAY TOO HIGH – can be causing her diarrhea, but so could the teething, also could be causing her more discomforts.

4. Not advocating for her to get PATCH tested (as per the allergist)

5. Her teething is kind of throwing things off, not sure if it’s teething or reflux flaring up.

Some of the things he said DID make sense, but it was kind of a frustrating appt. First off, I was blindsided by the SANDIFERS diagnosis. I guess I just thought “posturing” was reflux related but not necessarily sandifers. She doesn’t display all the symptoms, so I didn’t think that was it.

About the emycin…I guess I can understand where he’s coming from. Emycin is to help w/both DGE & reflux. So, we’ll have to start that up, I guess. I don’t know…that whole emycin things is still confusing to me. She hasn’t had any issues going poo on her own. I know it’s to empty stomach contents faster so that there isn’t anything there to reflux, but…What are RED FLAGS for DGE? I’m still iffy about this. Any Suggestions?

He doesn’t think she has any allergy nor intolerance issues. OH, OK. I COMPLETELY DISAGREE w/that. Anyways, that’s why we also see an allergist.

Her teething. Lucky for us it started up the day after her endoscopies so we have NO BASELINE to go by. We’ve seen improvements, but we’ve seen regression. So, it could and it could not be due to teething. SO FRUSTRATING. I’m glad she’s getting her teethers, but can we get a little bit of a break?

Finally, about the 30mg prevacid. He thinks it is WAY to high and that it itself could be causing her pain. The only reason why we upped the dose was b/c we saw her refluxing on the lower dose. So, could it really be causing her the pain…or maybe she’s just a kid who needs higher doses?! I’m at a loss w/this one. We’re not cutting back the dose. So, we’ll see how things go here the next few days. lol- He also wanted to know about Dr. Phillips b/c he had NEVER heard of him in the GI arena. I was more than willing to give him all the info, but he only wanted his name. Anyways…

Oh, and to top it all off…When the GI was about to leave the room, he said, “uh, oh.” I looked over to see that my 2yr old had COLORED all over their metal step stool (for the med beds) in addition to one of their toys. YIKES! I was mortified! Luckily, it wiped off. But my goodness, what a day!

[hellbennt]

hmmm…not sure what to say. jonah had sandifer’s and when he was properly medicated he stopped displaying the symptoms. so if you’re still seeing symptoms then you might want to try the higher dose to see if they stop…?

[Anonymous]

THE red flag for DGE is excessive volcanic vomitting!!!! LOL

The hard thing is excessive voimtting *can* be a sign of other reflux and relux-like issues. It can be an intolerance to what the child is eating but it can also be a severe allergy.

Have you had gotten the EDG results yet??? And did it include the 4 biopses???

I would be curious to see whath taht showed.

You might want to breeze through the following web e-magazine. She has a toggle when you can recieve and email once per month when she publishes it. She has a whole section on medical issues that mimic reflux. She also had pages of info. on DGE.

Also, e-mycin is being discountined. I have it on VERY good authority.

You will have to get it in a different form other than that tablets. Even the tablets will eventually be DX as well.

Sorry, we are in the same boat. EES has been a lifesver for us and we seriously don’t know what we are gonna do. We can’t do Reglan and we would never be approved for a drug study to use Propulsid because Jedd heart issues.

We have one month of our supply left, after that we HAVE to go without it.

I would ask for a RX for Carafate to get her throat good and coated before and in between meals. that way it will heal up real nice for you. Carafate is like SUPER mylanta. It workes great on kiddos who hae some damage and need to have time to heal.

[Anonymous]

NO VOMITTING WHATSOEVER w/Averi. I mean, NONE. She was only a spitter when she turned 2 months old and that lasted about 2 months and then back to being a silent refluxer. So, would DGE really be possible? He doesn’t want to do any testing for DGE. So, I’m outta luck there. TBH, I don’t want to do more testing anyways. I had heard about emycin being discontinued and asked the GI about that and he said yes and that it was unfortunate b/c they use it so often. Should I call and ask for a RX for the carafate? I guess they could do it over the phone. Would the carafate also help w/the sandifers? In essence, if it’s supposed to help coat the throat then the meds should work better, therefore no posturing?!?!?! Am I completely wrong?

I’m really considering upping the dose to 36mg as per Dr. Phillips suggestion. I just don’t want to make things worse. What to do, what to do???

ETA: Yes, biopsies came back, everything normal. She only had irritation of the esophagus and the GI said it was healing.

valentine4mommy2008-09-16 19:46:28

[Anonymous]

The carafate can help with the sandifers. IMHO

It coats the throat VERY heavily so any acid that does come up can’t penetrate it. thereby keep the child comfortable.

I know alot are afraid of Reglan but have you tried that yet???? It worked well for JEdd but he had irritablity side affects so we had to stop it.

Other than that, it worked REALLY well for him. I mean really well. I could drain his gastric juices with his G tube and I KNEW it was working.

He woudl have about 75-80% of a feed left after 2.5 hours. I woudl add the med to the drainage and put it all back in via thet G tube.

I woudl check 30-45mins later and sure enough he woudl drop drastically lower. I mean DRASTICALLY lower. He would have orignally have about 70MLs of the feed left and after meds he woudl have about 15MLs of the feed left. It was GREAT!!!!!

It may be an option for us when the EES is DXed and we run out. Since he is jsut about 1 full year older he may react to it differenly now. so, well see how it goes. We have to do some thing KWIM????

Sionce there was irritation in the throat you can ask for the carafate and it should help it heal faster. We actually used the carafate before Jedd had his EDG done. We used it as a buffer to help protect against damage.

For us, I think the Reglan worked better than the EES. We just couldn’t take the side affects.

To be honest with you, I wouldn’t do any DGE testing. The GES is extremely unrealiable MOST GI’s will do the meds and if they work they run with it. funny I know, but that’s what they do.

[Anonymous]

NO, not interested in the reglan route. I don’t think Averi has DGE. I was reading up about it and it just doesn’t sound like her. If she had DGE would she be pooing several times a day and almost immediately after eating? I just don’t want to add another med in if she doesn’t need it. I need to call the GIs office about the carafate and I might also ask to talk more about the DGE. She has been having a loss in appetite yesterday and today though. It’s so hard b/c I don’t know if it’s her teeth or not. ALright, off to call the GIs office.

[Anonymous]

hellbennt wrote: hmmm…not sure what to say. jonah had sandifer’s and when he was properly medicated he stopped displaying the symptoms. so if you’re still seeing symptoms then you might want to try the higher dose to see if they stop…?

Nicholas too. In fact, I knew he needed a dose increase (from 22.5mg to 30mg) when he started showing Sandifers again. There are some kids around here that needed a 40mg dose and they were fine.

[Anonymous]

Really? 40mgs? I didn’t realize you could go that high. Makes me a little more comfortable if I decide to up it to 36mg as per Dr. Phillips suggestion.

[Anonymous]

Ok, so we’re gonna try the emycin again. I talked to the GI and he wants us to try it for 2 weeks. If we don’t notice a difference then we’ll discuss a med change. I guess we can do that. They way he explained it to me is this…Basicly if I can hear Averi refluxing then she isn’t emptying her stomach fast enough. They want to empty her stomach faster so that when she does reflux there isn’t anything there to reflux. He also thinks that w/doing this we should see signs of the sandifers disappear. I REALLY REALLY REALLY we get something figured out, and SOON! I know/knew that prevacid wouldn’t stop her reflux, just the acid burn that goes along w/it. So, he said that they usually prescribe those meds in combo b/c one gets rid of the acid and one makes it so there isn’t anything to reflux. Makes sense and I do appreciate him calling me back b/c I think I understand some things a little better now about DGE and the emycin’s purpose. Thanks Again for all your advice/suggestions. We’ll give this 2 weeks and then change meds if necessary.

Oh ~How many days on an inc. dose of prevacid should it take for us to see results? For 2 days now I’ve inc. her dose to the 36mg but no change. So, I think I’m just gonna back it down to 30mg. Just wasn’t sure how long before it kicks in…

Thanks Again!!!

[Author]

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