| Posted By |
Posting |
Jan 06, 2006
ankie
| Reglan scare Hi, I posted a few days ago about the Reglan.
I am just not sure I am doing what's best for our daughter - maybe other parents have experienced similar doubts or have advice:
Anika was having a bout of serious crying, being awake all day, spiting etc for several days right before our last ped appointment (mid-dec). It was the worst we've ever seen her. We already had upped the Zantac at that time, and she was too young (3 months and 2 months premature, so really only a month old) for adding rice cereal. The ped then prescribed Reglan, as a last resort. He did warn about side effects and all, but we decided her misery was worse than the risks.
I ordered the Reglan (plus more zantac - she's still on that 3x/day 1 mL) per mail (90 day supply istead of 30 for same co-pay, big difference!). Because of the holidays it took a while for the meds to get here, and we started the Reglan just three days ago. However, over the holidays she appeared to be a bit better - only every few days she would be feeling really miserable, the other days she was quite ok - some occassional crying but nothing that wouldn't stop with a bit of rocking or the baby bjorn (which btw is the greatest thing ever for refluxers!!). However, when the Reglan arrived I started it anyway.
The past three days I have seen no major improvements. I have learned more and more about the Reglan and am a bit scared. I learned that it is also used as a galactagogue, and was not at all recommended to me when I was looking for something to up my milk supply while pumping when Anika was in teh NICU - domperidone was favoured (be it that it neeeds to be ordered overseas or through a compounding parmacy). I realize that dpd also is used for reflux, but has none of the scary side effects. I haven't noticed any. My husband feels we should not panic and keep on switching back and forth, without allowing time to see possible results (or the lack thereof) which I do agree with. But in the mean time I am wondering how long to try the Reglan for. I am also worried that if she was indeed improving on her own, we will attribute further improvements to the Reglan and leave her on it when not necessary. At the same time, if she improves more it might be because of the Reglan, and taking her off and then back on might not be the best way to go either.
I know now I didn't go about this the smartest way, but am looking for the best option to go from here. Or at least feel better about the situation so far.
Thanks, Ankie | Jan 06, 2006
hollis
mom of GERD infant son | Hi....our reglan experience Hi! I posted several times before about our experience with Reglan. First of all, don't beat yourself up about the decisions you've made... or the order of them.... etc. All of us have been in that situation, only to realize that we too should have slowed down a bit or approached things differently. Take for instance the time I split our son's Prevacid dose and then also gave him mandarin oranges for the first time both in the same day.... leaving me wondering if the increased silent reflux I was seeing was a result of less Prevacid or the oranges! Not the smartest, but we learn and make better choices the next time.
As for the Reglan, I can only give you advice from our experience....which as I posted earlier was both successful (initially) and then very very scary. I would agree that it's not a good idea to bounce back and forth between meds or introducing them or what not.... but in my opinion if she wasn't really that bad a few days prior to the Reglan, I probably would have hold off...or choose to stop it now so you can know for sure. You mentioned that you haven't "seen" any side effects to the Reglan and I feel the need to caution you that that's the huge problem with Reglan. You often don't see any side effects while your child is on it.... or you just attribute movement type things to normal newborn behavior and then once your child comes off of it.... the side effects are revealed. That's what's so scary about it in my opinion. Many parents put their kids on it and watch closely, seeing no side effects they think their child is doing okay on it. Then, months later they do see the side effects or have an awful time during the withdrawal window (which is quite long!) Remember that Reglan is known to mask the side effects it creates so please don't be mislead as to thinking if you don't see any, things are great. Obviously, my opinion is very biased considering we had an awful experience with Reglan... but I've learned so much about it in the meantime and I'm learning many, many parents have experienced similar things. Again, I guess for some kids the pros outweigh the cons....but I'd be certain of that before you did use it and it sounds like you're not feeling that it IS absolutely necessary. Something to think about too.... many of the side effects are irreversible. Had I known that some could leave my child with permanent issues and not just typical fairly mild side effects like nausea, rash, or irritableness I would have never ever allowed my son to take it. I think it's telling too that a lot of Peds and GI's are no longer prescribing Reglan to kids. You may also consider listening to/talking to adults who have taken it... they seem to give it and its issues a better "voice" where our little babes cannot. (Maybe in the adult forum) I wish you all the best... I know how stressful this is for you and your family. One day at a time.... Good luck. :) Hollis | Jan 06, 2006
lansima
Marsha
Son Logan Born 7-2003 with EA/TEF | I started adding rice cereal to my son's formula at 3 weeks of age. I have never heard of them being too young. For my son his reflux was always much worse when he was hungry (on an empty stomach) right before he'd eat. Then once he ate, I think it neutralized the raging stomach acids and reduced the reflux burn. Reglan just makes the formula stay in the stomach less time. My son's Pediatrician suggested it to me and I thought that was crazy. Why would I want the food to go through even faster? When he's the most uncomfortable on an empty stomach.
I think Reglan is for major projectile vomiting (my son always had/still has silent reflux). My two nephews had Pyloric Stenosis which is a tight opening at the bottom of the stomach that caused them to vomit up most of their formula. They both had minor surgery to repair it at 1 month old. | Jan 06, 2006
ankie
| website with info? I really apreciate all the info from other parents. I am also trying to find some info on Reglan via internet or book. I am curious to the percentages of kids on reglan ending up with side effects. I am not trying to say I do not believe the effects can be bad, but before going haywire and stressing myself out too much, I would like to know as many facts as possible (besides the experiences from others, which are also very helpful!).
Since weaning off of Reglan seems to be tricky too, if I want to stop, should I be aware that it is better to take it for a certain number of days? Call the ped? Do you have experience with the AR being worse and better on and off? Or were the signs really there that she was improving because of Zantac and age?
Thanks again!! | Jan 06, 2006
lansima
Marsha
Son Logan Born 7-2003 with EA/TEF | Zantac I'm newer to this site, so I don't know if it has been mentioned much. But on the ea/tef website most of the moms agree that Zantac did nothing for their infants with reflux. Prevacid and Prilosec are the way to go. My son had Zantac to start out with in the first few weeks of his life and I switched to a high dose of Prevacid around 1 month old (powder form mixed with water - I fed it to him by spoon) and I noticed a huge improvement right away. The pediatrician said that Zantac is an "old" medicine and the "new" medicines like Prevacid and Prilosec tend to work better. | Jan 06, 2006
lansima
Marsha
Son Logan Born 7-2003 with EA/TEF | FYI Zantac is a H2 Receptor Antagonist=Blocks acid production, and Prevacid and Prilosec are Proton Pump Inhibitors (PPIs)=They Shut down acid pumps. So they ARE different typs of meds not just different brands/names. | Jan 06, 2006
lansima
Marsha
Son Logan Born 7-2003 with EA/TEF | Zantac = bad Oh, so I would try switching to Prevacid or Prilosec and stopping the Reglan (since you weren't noticing any improvement). If it wasn't helping, why take it. Docs always say it takes 2 weeks for drugs to take effect, but I have always noticed within 24 hours weather a drug is working or not for someone (that includes my ex-husbands anti-depressants). But I'm not telling you what to do, it's just a thought. | Jan 06, 2006
hollis
mom of GERD infant son | Ankie try google If you Google... "Reglan side effects" or just "Reglan" you'll find lots of info. I actually uncovered a class action law suit in progress filed from parents whose children were severely hurt by the drug. Be aware however, that many of the percentages you'll find, of kids who do suffer side effects from it can be misleading. They are based on "reported" cases...which means many parents like my husband and I who didn't truly see the side effects until the withdrawal period are unreported and not actually included in that percentage. I think they are reporting it's somewhere around 20 - 30% however many peds, GIs and researchers believe that it's actually much higher. Still....even 20 - 30% when you are talking about potentially irreversible side effects is a lot in my mind. I agree with the last post... trying Prevacid or Prilosec and deleting Reglan all together sounds like a great treatment option. Prevacid definitely worked tons better for our son compared to Zantac. Good luck! | Jan 06, 2006
hollis
mom of GERD infant son | oh I forgot I forgot.... Yes be careful with weaning her off.... Reglan does have risky withdrawal symptoms. Our Ped made the mistake of actually telling us to stop our son's Reglan (after 16 weeks) suddenly.... and I do believe that this actually put my son into withdrawal and made him experience many side effects that could have possibly been avoided had we reduced his dose gradually. Definitely ask a specialist about that. | Jan 07, 2006
ankie
| stopping Hollis, you mentione the withdrawal. She's been on it since tuesday (so 4 days), and actually we have seen a decline in her situation, last night being horrible (diarhea, awful crying, no sleeping, etc), so I didn't give the Reglan to her this morning. Since it has only been 4 days, I am going to hope its ok. It's obviously been long enough to show some effects, but since they are all negatives and making her situation worse, I can't give this medicine to her any longer.
I did google it, and like you said, a lot appears to be somewhat biased info. Anyway, we're back to just zantac. I'll ask about the prevacid next time at the docs, and maybe we'll start thickening her formula then too (she gets breast with additional formula)
Ankie | Jan 07, 2006
hollis
mom of GERD infant son | hi I think you'll probably be happy with your decision to stop the use of it.... especially if she was that restless last night. I'm sure you saw the wealth of info on Reglan by googling it... much of it from ped, gi's, parents and other credible health agencies. I'm not sure if you'll see any withdrawal symptoms after only 4 days... you may... if she's been taking it regularly 3 times a day... her body is probably starting to get use to getting those doses each day. Maybe it's worth a phone call... to your dr... or just watch her closely (as if you already don't right? )
Good luck to you! I'd ask about Prevacid for sure. Instead of just neutralizing stomach acids (Zantac) the Prevacid actually helped our son to stop producing so much acid. It made a huge difference in our lives!! It appears to be very safe as well.... which is great. Hope all goes well! | Jan 07, 2006
blondy2061h
~Megan~ | I also agree with the things said. You should probably be thickening food, and Reglan should have never been prescribed before Prilosec or Prevacid was tried. Reglan is not a fun or a safe drug.
You asked about how many kids have side effects. I have heard that 90% of people on Reglan have side effects. I can't remember where I heard that though, so take it with a grain of salt.
You also mentioned domperidone. Domperidone is NOT availible in the US. Also, while people may have less side effects with it, it is still a a propulsid, like Reglan, so for that reason you should be going with PPIs, which will be more effective.
If you are not already doing so, you need to be working with a GI doctor. | Jan 09, 2006
shortstack1981
| My daughter was on reglan and had some horrible side effects. Her heart started to race and she had no control of her tounge. It was like darting in and out of her mouth. We pulled her off the reglan right away. We didn't ween her off it, just took her off and she's now on 15mg prevacid daily and seems to be doing fine. | Jan 10, 2006
ankie
| she's off it And we didn't see anything scary happen. It's been since Saturday now. She still has a bit diarhea, but not nearly as bad as she was when on the Reglan. I am so happy we stopped this medication - I was worried constantly when we were giving it to her. And although her side effects remained relatively mild, her AR did not improve so that certainly was not worth it. Thanks all for the advice! I will be asking the doc about prevacid next. Ankie |
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