Posted By Posting
Mar 14, 2009
jean9
Rx/neocate/motility ?s
Our dd Libby (GERD, FTT, food refuser)seems to be getting worse...

For a week we tried some behavioral therapy/reinforcment stuff, which helped at first, but eventually caused more stress for everyone...

Our Drs. convinced us to stop and try some other meds. and more testing to rule out medical issues. So, we tried reglan for a lil over a week and saw no change. Actually, her intake has gotten worse (only10-12oz/day) and now she's throwing up more!!!! (even off the reglan). She didn't use to vomit much at all. She had a head cold and the nasal mucous was making her gag/vomit, but now that she's "better" she's still throwing up everyday. It happens most when she goes to put something just up to or into her mouth (ie. binki, cup, bottle). behavioral? physical? psuchological? all 3? UGH!!

Now they say add e-mycin with reglan and change to Neocate Jr. (from pediasure) for 3-4 weeks. Do we have to try it/both together for that long? Wouldn't 1-2 weeks be enough? @ pahramacies have said they may not be able to get the e-mycin. Is that common?

Her weight gain is terrible and can't 'waste' much time. After reglan/emycin trial--they say we could try Levsin. Any experience with that Rx?

After these med. trials they say maybe we go to motility testing in Boston with a Dr. Flores. Sound familiar/good?

Still talk of g-tube/fundo options and the newest is: 'pyloroplasty' Any ideas on that?

if my ins. doesn't cover neocate... any advice on best way to get it? Is it OTC? Where? Does it taste/smell awful?

Just so scared we're running out of time re: weight loss, etc... and she's getting worse lately! Aren't they supposed to get better as they get older???!!!!!! < p> BIG THANKS to all!

Mar 15, 2009
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
Neocate is OTC, but expensive. You can ask the pharmacy (they keep it behind the counter) order it online. One place I found is babywuvinc.com. Are they certain allergies have been ruled out? Does she take any table food at all? Is there anything she won't gag with?

I don't know why the pharmacy woudn't be able to get the erythromycin - it's a common enough med. Have you tried another pharm and asked? I'm so sorry to hear all this mama. I'm not too much help.

Mar 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
Ya know, behavioral will only work IF all medical issues have been addressed and fixed first. ((HUGS)) Unfortunately you have no tube to fall back on.

Did they tell you WHY they want to do a Pylorplasty?? That is normally done on a child who is confirmed as having Pyloric Stenosis. If you do it on a normal child you can cause dumping syndrome. That can lead to blood sugar issues. You don't want that.

I'd PUSH HARD to go to BDH and soo that motility specialist. Being that you are FTT and facing a G tube and Nissen, they should see you FAST after getting ins. approval.

Neocate is OTC and will cost a fortune. and NO ins. co won't pay for it. We couldn't even get Jedd's formulas covered and he was 100% tube fed. Most of the time ins. co. will cave if you're tube fed, NOPE not ours. :-(

I know that Erythromycin was discoutinued about 6-9 months ago. It can still be made but you need to go to a compounding pharmacy and they can crush and suspend it for you. The parent Co. that makes Erythromycin is only producing it in pill form now and not in the liquid. That is where your pharmacy is having issues.

Mar 15, 2009
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
did she have a milk scan or a UGI that showed slow emptying or a problem with the pyloric valve?? drs don't just suggest a pyloric surgery unless there is a reason- if i were you i would definitely be asking the dr about this.

i do no know if this is 'procedure' for every dr, but before they put emily on reglan they let me know exactly why they were doing it. it seems weird to me that they would be giving you motility meds and even combining them without you understanding why. (other then hopes it will help your dd)

i would be calling the office everyday asking about the medical issues to straighten them out before behavioral therapy. If her issues are that severe I would go straight into the process to get into boston; sometimes there is a wait to see the drs.

you need a compounding pharmacy. some walgreen will do it but you can go to hospital pharmacies and get things compounded too. call around to pharmacies in your area they likely know which pharmacies compound and which do not.

i really hope you can get something figured out soon, good luck hugs!
Mar 16, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
((HUGS)) Sounds like you've got some great advice. Prayers and thoughts your way.
Mar 16, 2009
jean9
responding
I've been told allergies have been ruled out with the blood work and endoscopy biopsies we've done. Is it overkill to do e-mycin with reglan? How long is long enough of a trial to say it works or not? the pyloroplasty conversation came up b/c Libby will eat something (ie. cheese) and then throw it up as much as 6 hours later! DGE, right? She had the test once, but only took her typical 2oz. and so it showed 'normal' DGE. Thinking of repeating that DGE test... If motility tests show poor motility-what is course of treatment for that?
Mar 16, 2009
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
RAST or blood tests don't always show allergies. A had an RAST test that showed negative for everything but rice, which we knew she was allergic to milk and soy. We had scratch testing and she had over 12 anaphylactic reactions. There are others that she can't take that she hasn't been tested for. The scratch test is difficult when they are that age but it is possible and we got pretty reliable results.

We did reglan for minor DGE and to help with reflux but from what I have heard from docs and read other places E-mycin and reglan are supposed to do the same thing and you shouldn't need both. I would definitely repeat the DGE test. When she have her endo? We are getting ready to repeat ours and it has been 8 months since our last to check for EEG. Eosiniphils due to allergens could be a problem if it has been a bit since her last scope. I'm sorry you are having so many problems. I hope you can figure something out soon.

Mar 16, 2009
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
i would repeat the test. i believe they can run a NG tube if a child will not drink to complete the milk scan. there is now way to tell if the reglan and ees med combo is overkill, only a dr can tell you that. but i would question the drs further if the test showed 'normal' gastric emptying.

sometimes reglan works right away and sometimes it takes a few days. with emily we could tell the difference at least 4 doses in. It was amazing for her DGE but she was a screaming flailing crying mess. we took her off it in less then a week.

i have heard that EES is a great med for some and sometimes eythromycin (ees) just doesn't work. emily was not a candidate to try it because she has kidney problems.

if she has had a milk scan it should have shown a problem with her pyloric valve i would ask for a repeat Milk scan (DGE test) just on the fact that they were talking about the pyloric dilation. good luck!
Mar 16, 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
Well we never tried E-mycin with Reglan but I imagine you can do it.

I'd seriously go to Boston Children's for testing for sure. They have a Cisaprid (I think I spelt that wrong..LOL) Program there. They can get you the drug IF you get approved for the drug study. Cisaprid was used for years in the US for motility but we pulled due to cardiac issues. In their drug trials/studies, they follow there patients VERY closely. Our Ped talked to us about it but we would NEVER had gotten approved wince Jed had a CHD that had been repaired. He'd never pass muster to get approved based on medical history.

With DGE it is best to use LOW fat but high cal foods. Those tend to be the best foods that will pass through the system faster.

The vast majority of children who have DGE are treated with diet restrictions and either E0mycin or Reglan. In the US those are pretty much the limits to what can be done.

With time and age a child can get better. There is also Viral Induced DGE that will pass once the GI tract heals up. Which can take months to years. I have met an adult with the viral type of DGE. She had to have a G and a J placed because she was losing weight.

With viral it can come and go, the DGE that is.

Of all the kids I've met online with DGE I haven't heard of any of them being treated with a Pylorplasty.

Most of the time kids wiht Motility issues are out of the league of regular GI's and need to be seen at a by a GI Motility specialist

Talk to you GI (If you like him.her) and see if you can get that referral put through to Boston. You won't regret it. I know lots of kids who go there and ALL the MOthers love that place.

We went to Nationwide and saw DR Di Lorenza and Dr Moussa. We loved it there. They are in Ohio.

If you have had a DGE scan that shows slow motility then I'd go see a motility specialist.

BTW just because you have the DGE diagnosis doesn't mean you have to have a tube to help control it. I know someone whose son has it and they control it with meds and diet restrictions. They have seen great improvements by doing those things.

Check with your
doctor first!