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Mar 25, 2009
jean9
reglan truth?
So, what's the truth about the reglan side effects?

I've read the recent (2/26/09) FDA statement which apparently is not new info.

...and my GI Drs. say that you'd see side effects (ie. tardive dyskinsia, or other symptoms) within the first doses and then when the med is stopped so would the side effects.

Am I reading the FDA release wrong? I'm thinking they say you can have these symptoms even after the drug has been stopped. So can you not show side effects while on it for many months and then "later in life" just bust out with these probs? And are they permanent?

Am i overreacting? They say it's very rare, but anyone know how long it's been used this way to determine that it's very rare?

Mar 25, 2009
jean9
also...
my DD (18 1/2 lbs.) has been on and off it. her initial dose was 1 ml 4x/day and then increased to 1.5 ml 4x/day.

if your child is on it and then is vomiting with possible tummy virus where they can only keep water down well, is it ok to stop the reglan until illness subsides? Does it irritate the tummy? how about e-mycin effects on the tummy? we're supposed to be doing both...

hard to tell if her vomiting is b/c of illness or part of "the vicious vomit cycle" where when it happens once then it keeps happening... possibly out of association/memory/ behavior, etc... KWIM? thanx!

Mar 25, 2009
sickofspitup
reglin?
Hello, I was just reading what jean9 was saying and Im just as confused. I dont want to start this med but Im thinking its the best thing. However the side effects have been in turmoil if I even want to start this medication. Anyone giving this to there child? If so any suggestion. Thanks
Mar 25, 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!
This drugs is one of those with 50/50 chances. Many kids do very well on it and others have side effects right away. We were one of those that had to stop after 2 days, but it did decrease the vomiting. Talk to the pharmacist and/or MD for any concerns.
Mar 25, 2009
mommato3
My 4 month old son is on it and has been on it since 4 weeks old. It has done wonders for my son with no side effects. Don't get me wrong we still have food refusal, crying during feedings and other major feeding problems but it has helped tremendously with the projectile vomiting. We have tried to take him off it twice and he began projectile vomiting EVERYTHING back up so we started it back. We know the warnings and what to look for but for my son the benefit he receives from the med is worth him having it. That is a decision you will have to make with your doctor. My son does great on it but others don't. I don't know anything about E-mycin. My son is on .6 ml 4 times a day of Reglan and 15 mg twice daily of Prevacid. He is also on Elecare and we are still having problems but things are slightly better.
Mar 25, 2009
bethe'
Trying everything before surgery.
My daughter was on this madication for about two weeks and I took her off because before she would reflux and swallow it but on the medication she would forcefully vomit. I was not to stoked about it anyway, because of the serious side effects.
Mar 25, 2009
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
http://www.reflux.org/reflux/webdoc01.nsf/(vwWebPage)/ReglanBlackBoxRelease.htm?OpenDocument
Mar 26, 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 know alot of Mom's who are petrified of this drug. You must remember like with any drug a MAJOR reaction will happen in a VERY limited amount of children. that is not to say that it can't happen. Also, the side affects are determined using all kinds of children. but children with neurological problems have a higher rate of occurrence.

Any drug you take will have side affects. If you read all of them and are afraid of all of them, then you will be scared all the time. I guess my perspective is a little different as Jedd has been on a medicine cabinet full of drugs so I stopped reading the side affects lists that we got.

Discuss your concerns with the GI or Ped who prescribed it. I will venture to guess they will tell you the same thing I just did. The reactions are RARE. The vast majority of people who take it will see the same type of reactions as we saw, extreme irritability. Many also see the fatigue as well.

Jedd's dose was high. He was taking 2.5cc's 5x's a day when he was on it. It's one of those drugs that is weight sensitive.

Also, Jedd has a heart issue and NONE of his DRs seemed concerned that he was on it. They were all OK with it. But for us, the benefits outweighed the risks completely esp. considering that the chances of having a major complication was rare. This is the number one drug we wished we could have stayed on. It helped GREATLY with his gastric emptying and was wonderful. We saw a huge decrease in vomiting and saw good weight gain in the 16 weeks he was taking it.

I like the box warning, but really should they do that for ALL drugs that have side affects??? I don't know. I understand why they did it really I do. But there are other drugs that cause side affects and they don't get a black box.

Jedd took Lasix for his congestive heart failure. We weren't told that it could possibly cause Potassium issues in his body. And it wasn't listed as a side affect either. We didn't know until one day we went to the Cardiologist and they told us they were cutting him back to once per day and adding in Sprironolactone. A Potassium sparring diuretic.

Would knowing about the potassium issue had changed our minds about using it, nope, he needed it. His DRs had just kept an eye on him for us and when they saw the need they adjusted his meds to compensate.

Like I said, I really don't want to come across as against the box warning. I think it's a good thing because there are some crummy GIs out there who are not properly giving information to their patients parents about this drug. So it's a good thing. I just think that it *can* possibly cause issues like we are seeing here. Where parents who are already worried about the meds their kids taking, are worrying even more.

Our take has always been, it he needs it and it can possibly help then we are gonna try it.

Jedd takes a Probiotic to help with his reflux. I wonder what kinda warnings there would be on that if it was done??? We do it because we have seen an improvement in his GI health since starting it. And we knew that other parents had done so with the same results.

What it all comes down to is this: making informed decisions after discussing the medications with the Dr. Noone, even the box warning can make that decision for you.

Deep down I am thinking that in a few years after this warning that the FDA is gonna pull this med from the market like they did Cisapride. Where will that leave the countless children with motility issues then??? They'll be left with Erythromycin. A drug that can CAUSE GI upset. NOT the best option for a kids with GI issues already. KWIM

I know there are drug studies in the works for using Augmentum for Motility issues as well. Jedd participated in a drugs study for that. So, maybe one day that will get approved. But then again, that's a drug that causes GI upset again. Not the best option. And yes, it caused really bad diarrhea when Jedd took it. He blew out 3 diapers on a row and leaked all over the hospital bed sheet twice.

BTW Europe and Canada still has Cisapride in use. It's just FDA standards that prevents it from being used here.

In a time when parents have little choice in motility meds we felt we had little choice. If we could improve Jedd's quality of life by giving it a go, we would and we did.

Just my 2 cents. :-)

Mar 26, 2009
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
We used Reglan very successfully for 8 months and it worked wonders on my sons apnea and aspiration issues. He was very irritable and didn't sleep well on it but we tolerated that because of what it did to save his life. Unfortunately, at 8 months he suddenly developed tardive dyskinsia and we had to take him off of it. He also had a few other side effects but within days of stopping the drug all the symptoms went away for us. Unfortunately, the ALTES and aspiration returned. So I do think that the symptoms don't always show up within the first 2 days. I have always been told by ped and GI that the symptoms were temporary and reversible with the removal of the drug but the way I read the release too it seemed like they were saying they could be permanent. I agree with the previous posters that you need to way the pros and cons of every drug you use with your child. I would use it again in a heartbeat if we needed to.
Mar 26, 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
I am going to agree with Jessica on the benefits of Reglan. I think it did a great job with Adriane's motility problems and really cut back on the refluxing as well. We have a slight history of petit mal seizures and Adriane might have had seizures regardless of the meds but this medication made it worse. She was also very restless and angry. She couldn't sleep so it made her even more of a bear. I would have loved to have kept her on it longer but couldn't do it. There are a lot of others that i know love it and have had no side affects. I think every child is different. If you feel comfortable trying it you should. HTH - Amanda
Mar 26, 2009
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
There is a HUGE difference between listing "potential side effects" and a blackbox warning. A black box warning is the highest warning the FDA can give out. As others have mentioned, the symptoms are not new. The fact that there is now documentation of large enough numbers of patients with these side effects is what prompted the warning. (To the best of my understanding).

The majority of people see a reduction of those side effects once they quit taking the medication but as the warning states, not everyone does. Some people (it mentions the elderly being at high risk for this) continue on with the symptoms.

Here is our story with Reglan: http://www.reflux.org/reflux/webdoc01.nsf/(vwWebPage)/Jenblog-20090313.htm?OpenDocument

Again, I am def not against using this med but the benefits should far outweigh the risk of side effects. For me that means that my child would have to have life threatening issues with GERD to place her on reglan again. I am just glad that now parents will have the entire info because there were a lot of DR's who were not explaining the side effects. They were not explained to us with our oldest (who is now 6). :(
Mar 26, 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.
Jessica is right on the money. We have been on it for some time now at a high dose like Jedd's. We watched Zlike a hawk...if you see the strange behaviors they will become apparent very quickly and subside when the drug has stopped. I would think that if you continued on the drug once side effects appeared you might have them linger after the drug is stopped, but I haven't heard of that happening. The benefits outweighed the risks for us. Start with the smallest possible dose and keep your eyes open. You will hear LOTS of people talk about how scary this drug is, but A.) some are talking out of their a**, B.) Some just saw the press release and freaked (there is NOTHING new in that press release) or C.) some had a bad experience with it. Oftenthe bad experience is irritability or insomnia...it's not always parkinsonian like jerkieness. Just be smart and carefull...like you would be with ANY drug you give your child.
Check with your
doctor first!