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Jul 14, 2009
refluxqueen
Your experience with Erythromycin, did it work
Hi , Just hoping to hear from anyone who has tried Erythromycin for reflux for their children and if it worked or not? Going to give it a try starting today, the nurse said I should see if it works in two to three weeks. Please share the good bad and ugly if you have a minute. Thanks
Jul 14, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
no ugly, no bad...just no good. Reglan worked wonders, but we started seeing side effects...Erythro did nothing for us...no side effects, just no change in motility. I know it works for a lot of kids, though! Good lucK!
Jul 14, 2009
refluxqueen
Thanks for your input, I am really hoping to see a change with this.... He had said he didn't usually see Reglan work in my sons type of situation, but that we could try it, but I 'd rather not, especially if he doesn't think it would work..If this doesn't work then he will do an upper GI. Which I rather wish he would just order now, to be honest!
Jul 14, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I'm confused as to why you would need an UGI in order to start a motility med. I'd do one for sure though, it's a great first test to do along with a Gastric Emptying Scan and an EDG (scope in the O.R.).

For us, EES (erythromycin) worked pretty well but Reglan worked MUCH better.

Are you using any other meds to combat the reflux???

Jul 15, 2009
refluxqueen
He had already done a abdominal film for suspected constipation, so it had shown some stool so we did a Miralax cleanout and are on a maintenance dose of Miralax... I would like an UGI to rule out a hiatus hernia or any other anatomical things it could show. This GI has written papers on his position of avoidingunnescessary expensive testing and attempting to first treat "easy fixes" like constipation etc. Which I can appreciate that position, I can... But I really would like to know the cause.... So I guess his next susicion would be slow motility, due to my son regurging frequently and sometimes four hours after a meal undigested foods....I think it's got to be either slow motlitliy or a stricture or hernia.......... We aren't using anything other than Miralax and now the Erythro for the reflux, he's been on a long course of Zantac, Long course of max doses of Prevcid and Prilosec and not one of those worked either. I don't know what else to try?
Jul 15, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
How long did you try each one of the meds (prilosec, prevacaid) and what were the doses. they can take as long as 3-4 weeks to see the full affect of the med.

Also, alot of kids just need a high, split dose in order to get relief. When they do the Upeer GI, make sure they "follow it through". This will rule out any malrotation of the intestines that can cause reflux issues (motility) as well. May as well make sure they do it right KWIM

Now with Jedd, he required a good dose of a PPI in the a.m. and p.m. and a motility med to get him moving. It ended up taking us about 2 full years to really get a good handle on his problems. YOu have to keep in mind also, that even though the meds are doing their job as far as controlling acid, you will still see vomiting, Nothing can truly stop the vomit.

Jul 15, 2009
refluxqueen
We did Prevacid 30mg for 8 weeks, Prilosec at the upper dose 40 mg for 8 weeks and Zantac 6 weeks,Zantac was the first one we tried because it seemed to control it when he was a little fella.. He's been taking the Miralax for almost three weeks. I so hope this Erthro works, although reading about the possible side effects is enough to make me a bit nervous with the arrythmia info. He doesn't have any hear conditions that we know of but he did have an episode where his little heart was pounding hard and fast from a bad set of refluxes all together. He is 7 years old and weighs 60 pounds. The dose he has been ordered of Erythro is 125 mg 3 times daily.. Which is lower than the antibiotic dose but seems a bit high than the 1 to 3 mg per kg dose. He is having to take the pill that I split and have to grind to put in things. I just got back with lots of yogurt with probiotics in it to combat any potential diarrhea.... I will make sure they follow the GI through, if we can ever get it ordered! I just would love to know the cause of this coming back...When he was younger and suffering, he also had RAD and lots of pneumonias and bronchitis. That was what led me to a pulmonary dr. who suspected reflux, but not til he was two!!! He was for the most part a silent refluxer as a baby, although even then he would regurg chunks of undigested food from hour earlier.. :( thanks for the advice!!! Two years to get Jedd's issues under control., you must have the patience of a saint!!! He did have a nice episode of Bronchitis in April and in May that the ped. wondered if was tied to reflux, but noone has ever said definitively. I dunno, part of me is so hard to be patient to wait the two weeks to call the GI back for the UGI.
Jul 15, 2009
refluxqueen
Is 125 mg/dose alot for a 60 lb kiddo? that's a bit more than 5 mg/kg and I thought the nurse said it should be 1 mg/kg....Guess I had better call her?
Jul 15, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
We were afforded the 2 years with Jedd because he had a feeding tube we could use. So, if he wouldn't eat or take meds, in the tube it went. YES, that dose seems high!!!! I'd call and make sure it's right. I have had a pharmacy put a dose 5x's what the RX was written for, so double just to make sure.

With his past history, I'd be asking to go to the O.R. to have a scope done ASAP. It could be there is damage in there and those high doses will need to be kept on board for longer than they were to help heal things up some.

Jul 15, 2009
refluxqueen
Thanks, I have a call in to his nurse about the dose, maybe I should ask if he'd consider doing a scope to check for damage? Shouldn't that be something he should come up with? I have dealt with enough drs. to know most don't like to have a parent doing much in the way of suggestions....Even though I for one would really appreciate an UGI and a scope, especially before school starts!! To compound matters, I am in nursing school and my mondays thru fridays are nothing I will be able to work around, and this GI is 4 hours away from us. Agh. You think there's any good way to ask for some tests without sounding pushy?
Jul 15, 2009
refluxqueen
well, believe it or not the dose they believe is correct? OK. So I guess I will give him that much, and BTW the other nurse I spoke with seemed to be in a hurry so I didn't feel it was a good time to request more tests. Sigh.
Jul 15, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
OK over the computer typing this is gonna sound really blunt, just wanted to warn you...LOL

Any DR who gets upset because you are asking for tests, appt, or referals or anything you feel your child needs to get better would not be a DR I would keep around. JMHO and I warned you that might sound blunt.

This feeling on my part comes from first hand exp. We had a GI who was horrible, he made me feel like a bad Mother who had NO idea what she was talking about, he also let Jedd be in constant pain and could have cared less. He also, wanted us to plod along with an NG tube shoved down my son's nose because eventually they all eat. GGRRRRRR

Firing him, was the BEST decision DH and I ever made.

It took a while but we assembled a TEAM of DR who all work together with DH and me to decided what is in our SON'S best interest, not their DR egos!!! And I do mean team, we have seen: a Ped, GI Urology, ENT, general surgery, cardiology and the cardio-thoratic surgeon, as well as an Early Intervention team that included an ST and an OT for speech and oral motor skills. We have an AMAZING team in place and I would not change a single on of them.

This feeling came about because of this situation a LONG time ago, before we fired said GI:

I was on the phone giving hell fire and brimstone to the old GI's nurse. I stopped, pretty much weeping by that point because NOONE would listen to me about my son, I told her, I am sooo sorry, I don't mean to take it out on you, but my son is in alot of pain and NOONE seems to care.

I'll tell you word for word what she told me, I remember it like it was yesterday and it to this day, one of the best pieces of advice I was ever given, She told me:

Honey, don't even apologize for being the BEST advocate for you son that you can be. You are his only voice, he can't talk so you must talk for him.

That's a keeper of a nurse right there, too bad she works for a horrible GI.

So, remember, YOU are your son's advocate, his ONLY advocate, be a good one. If the DR doesn't like it, get a new one. Find one that isn't bent on having a BIG ego. Learn to step on toes and ruffle feathers, learn to NOT apologize for doing your God give right, being an advocate for your son. (((HUGS))) Go get em' Momma!!!!

Jul 16, 2009
refluxqueen
thanks Jedd's Mom! It is taken me awhile to answer as I am digesting what you said. I know you thought it sounded harsh, but I also know it can be so true. I went thru a nightmare with my other son a few years ago, and it was the nightmare doc. who was not responsive to questions and or suggestions.... I was fortunate to find a wonderful doc for him after he endured two years of suffering while the doc lied to me...... I know all too well..... I am just deciding if this doc is receptive to suggestions or no, I am treading water right now... It was a five month wait locally to get into a GI and so I took my son to this GI who is four hours away..... If I burn bridge there it will be another 5 months again locally. He really hasn't given me an indication that he has a large ego YET. I guess I am just a bit gunshy from previous experiences with that other doc. ANd I am spoiled royally by the Great doc I found for my other son for an ear prob. Ach. I guess tomorrow I might gather the courage to press for a scope and possible barium swallow to be done sooner rather than later.....He complained yesterday that it felt hard to breath but when he showed me where it hurt I think it was really his esophagus hurtin, it was right behind his sternum. I think I will also ask about going back on a PPI to see if it can help the discomfort he's complaining of. He really didn't eat much at all yesterday and still was refluxing. So you say nothing will stop the vomit, we then just need to keep it from hurtin and see if we can find the cause.....Thanks so much I will let you know what goes on next!
Check with your
doctor first!