Home › Forums › Infant Reflux Information › Medicines › Domperidone makes baby hungrier – reflux worse?
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September 16, 2009 at 8:54 pm #63901
Anonymous
InactiveHi All,
My son who is now 13 weeks today and about 14.5 lbs is on a Prevacid compound (1.5mls once a day) and Domperidone (2mls, 3 times a day).
His reflux has gotten worse, in our opinion. Once a silent refluxer, he is now starting to spit up a bit and cries/screams each time. But he is not as bad as may of your babies, he may spit up 3-8 times a day and just wee bits. But he is also drooling sooooo much recently too.
He is also ALWAYS hungry and I am wondering if the domperidone contributes to this. He eats about 4-6oz every 2 hours and is ravenous!
Since he eats so much and screams bloody murder for it (we cannot even burp him properly b/c he gets so hungry even during a feed!)
He is on Alimentum as well, which is also pre-digested so I am sure that’s not helping either, but he cannot take anything else, he has a milk protein sensitivity.
Has anyone experienced this as well? We are considering asking our paed to take him off the DOM and see if it will make him less hungry, therefore spread feeds to reduce acid and also help him scream when he can’t get his food pronto.
Thoughts? Tips? Advice? We are in Canada.
Thanks!
Leah and baby Sam
September 17, 2009 at 9:25 am #63908InactiveI would personally try to up the prevacid, trying a good dose of properly made compound (as each dose needs to be at least 3.5mls to ensure enough buffer per dose, or else not working correctly) or try the fastabs and try to stop the domperidone. Yes, the domperidone does make them hungrier. Also, no need to be on it if it’s not entirely nescessary- really it’s more for delayed gastric motility than reflux. We are also in Canada and tried it as well, but stopped it as it didn’t help. Also, sometimes wanting to drink a lot can be a sign of reflux discomfort- they cry and scream, and we give them food, which for some of them the liquid soothes the burn. But they’re feeding too often so they reflux more and it’s a cycle. I’m personally one who believes in feeding a baby when they’re hungry. Anyhow, like i said, I’d try off the domperidone and see how it goes.
September 17, 2009 at 10:43 am #63911InactiveThank you for your advice and support, it is greatly appreciated. Since I am somewhat “new” to this reflux world, would you mind explaining to me, if you could, what the “buffer” is and why you feel 3.5mls is what eh should be getting? if I try to explain this to my dr, I want him to feel like I know what I am talking about and why its important Sam get the correct dosage.
On the other hand, you also mention fastabs. Are they available for 3 month olds? How are they administered and at what dosage typically? Do they need to be dissolved and if so, how?I hope I am not asking too much of you to explain this to me, but its greatly appreciated and could help us out enormously.
Leah and Sam
September 17, 2009 at 11:38 am #63912InactiveHi Leah,
Before I give you the details, it would help to have some more info. Sam is on 1.5ml/day, how many mg/ml is his solution and how many mg is he getting in total per day of the prevacid?Our history- my dd was miserable and had a bad feeding aversion from reflux. I couldn’t get any docs to give her a good dose of PPI (check out http://www.marci-kids.com, you can read about dosing, also scroll down to patient stories and you can read Hailey’s story and some questions that I asked marci-kids about their dosing). She was using a compound and it was never made properly so she never got better but the pharmacist denied this as did our docs. They would only do conservative dosing- we are in Toronto and they follow sick kids regimen which is on the conservative side- which is fine for some babies who are doing well with a low dose, but not for others who are having complications.About the fastabs- they weren’t available back when we needed them in Canada, aka the solutabs in the US. You dissolve the pill in a bit of water, squirt with a syringe and baby drinks it, tastes yummy. Only catch is, that you have to give on an empty stomach and follow up with a meal 30-60 minutes later, and for a baby that means about 6oz. If that’s an option for your son, you can always try that. In the end, we didn’t trust the compound, it definitely wasn’t being made correctly (at it’s worst, we were on 20mg/day, made as 20mg/ml, which is actually outrageous if you know the rules of compounding. The trick with the solutabs is really the empty stomach and timing, so we went with caracream, which is now called buffer babies and you can make your own compound at home using prevacid capsules, don’t have to time around meals, and know that it’s being made correctly. The overall trick, is that you need to have the dose high enough overall, or it won’t help.I’m going to attach a link for you about compounding PPIs, the rules that need to be followed for it to work well. The dose still needs to be high enough though, and I guess that your ds is on a very low dose. Really the dose depends on the doc and the weight of the baby. We were on everything from 7 mg to 30 mg, and 30 was what she needed. She was about 8-9 months by then, but some babies were started on 30mg right off as infants. I think how high your son needs really depends on how much pain you think he’s in, and what the issues are- can he eat, is he gaining and developing well, can he rest, is he comfortable in general. Regardless, the PPI won’t stop the spitting up, just the acid, and hopefully the pain.In the following thread, everything written by refluxsol was our beloved Joel- who worked for marci-kids in the lab. Marci-kids did pediatric research on compounding PPIs and later developed zegerid. They found how the meds needed to be made. Joel came on here to help us out, so we knew what to ask for. If you scroll down to my part of the thread, that’s what I learned from compounding from our experience.Also, if you look the thread about treating GERD with PPIs in the medications forum, there’s more info there. HTH. Good luck.September 17, 2009 at 9:26 pm #63927InactiveWow, thank you so much for your help. It is a lot of information to read through and to understand. I am learning, slowly!
Sam’s
prescription states 3.3mg/ml. When I look at his mixture breakdown
report, the compounding pharmacy uses both 15mg packet and a 30mg
packet (I don’t know if that means anything to you, as it makes no
sense to me).I am not sure of this: is his compounded Prevacid an immediate
release or delayed med? We give him his one dose at night when he is in
his bath (its gets so messy and he drools it all over his face) and
then when we give him his nighttime bottle of Alimentum about 30m mins
following his bath.Maybe we should give it to him after a meal instead? There are no
instructions listed on his med bottle, other than to “shake well” and
“keep refrigerated”.I am interested in this Zegerid powder for
compounding – do you know if its available in Canada? (we are in
London, ON). Is this something you would have to do yourself or if my
dr were to script it for Sam, would the compounding pharmacy do it?If this is the case, why don’t dr’s prescribe Zegerid compounded to
all babies if its easier and better for them to take? ARGH! 🙂Our
paed is a good dr, he has co-edited the Canadian Paed. Book and has
been in Today’s Parent, etc… so I know he is a great dr. I just want
to make sure I know what I am talking about and make sure he knows
SOMETHING about what I am talking about. He is not a GI dr by any
means, but prescribed Sam with the domperidone and prevacid right away
after I diagnosed him with reflux, which he later confirmed. 🙂 Oh, the
love of research. 🙂I like the idea of the fastabs, though. If we could give Sam one
dose of that, we could still give it to him in his bath and give him
his bottle later. The catch is…………………… this is the ONLY
bottle in the day he eats BEFORE sleeping. He usually BEGS for his
other bottles right away upon waking, he is sooooo impatient and wants
to eat NOW and if it doesn’t come, he screams bloody murder until he
gets it, which I am sure only makes his reflux worse form all the darn
screaming!! LOL 🙂Or do the fastabs need to be given more than once per day?
Well,
Lori, thanks again for all your help, it means so much to know that
there are other moms out there willing to help less-informed new
mommies.Leah
September 17, 2009 at 9:38 pm #63928InactiveI just also wanted to say I am just like you, in that I will not deny Sam his bottle when he wants it. He obviously needs it because he IS that hungry, or, needs it to feel soothed.
For the life of me we have TRIED to spread his feeds…. and he just screams until he gets his food, LOL, the boy has no patience. And I know the screaming and crying just makes it worse, so why even bother trying to stop something which is inevitable anyways?!
Having said that, Sam hasn’t had a dose of Domperidone since last night (our choice to let dr know if we noticed any difference). I cannot believe it – he actually went for 5 hours between a FEED! This has not happened since he ONCE slept for 6 hours straight at night. (he does a 4 hr stretch then a 3 then a 3 then a 1…weird)
He was, at the time, sleeping in his car seat in a nice upright position. He had had a 6oz bottle at 11:30am, then tried to nap – but woke in pain and begged for another bottle at 1:10pm, so I gave him 3-4 more oz. So, within 2 hours he had downed almost 10oz, yikes! And this is normal.
What wasn’t was the looooong spacing between 1:10pm and 6:10pm, when he finally had his next bottle. Not sure if theis was b/c he was so sleep deprived or b/c the Dom didn’t make him as hungry. or, he was full, b/c he ate like a madman 🙂
He did spit up again today and cried each time, but now maybe I am thinking that the Dom just doesn;t do anything except make him hungry AND I think that he eats to soothe his throat/tummy.
I’ll le the dr know this tomorrow and see if he knows anything about the fast tabs and hopefully he’ll give a proper dosage.
September 18, 2009 at 9:14 am #63931InactiveLeah-
Sam is getting 4.95mg of prevacid per day- that’s SUPER low! We didn’t even start out that low when Hailey was 8 weeks, and she was a lightweight.Your compound is immediate release- that means that you don’t have to time around meals. BUT, if it’s not being made well, then it will degrade before it gets a chance to be activated in the stomach. Meaning that it won’t work. If there’s not enough buffer, which there can’t be in a dose of 1.5ml, then it won’t be protected from the acid, and it also won’t be activated. So, it’s probably like he’s not getting anything. That being said, if he’s not uncomfortable, then maybe it’s not a huge issue. There are some kids who are just happy spitters.About zegerid- you can’t get it in Canada. You can get buffer babies, but have to order directly from marci-kids.Fastabs are easy but hard to time around meals for babies, and may not work well for some babies, especially if the stomach always has food in it.About docs- ours is great! Very well respected, and works for Sick Kids, our ped that is. Our GI doctor was from the GI team at sick kids. He knew nothing about giving the meds. He told me that as long as my daughter was not failure to thrive, it didn’t matter that she hated eating, and that I had to spend every waking moment trying to sleep feed her, as she wouldn’t eat when awake and hardly even when asleep. The answer to her feeding problem was to see if she liked strong tastes like ranch salad dressing!…. anyhow, my point is, that even the best doctors, especially if they’re older, can be old school when it comes to reflux. They’re not always up to date, and often don’t know the practice standards.Good luck.September 18, 2009 at 10:02 am #63932InactiveThanks for your reply. We just came back from the dr and he is putting Sam on 7.5mg fastabs, which we will pick up later. I asked him if the dosage was correct and he said yes, it was right for his weight of 7 kilos.
I asked him what we would do if that wasn’t helping and he said he would consider upping the domperidone dosage.
In any case we have a follow up meeting in one week. Hopefully we can time Sam’s fastabs with his bathtime, or just before – he plays in there for a good 30 mins anyways, LOL, its his favourite thing.
I’ll let you know how he does over the next couple of days.
Thanks again for being such a great help and support, something we really need right now!!Leah and Sam
September 18, 2009 at 1:53 pm #63935InactiveSick kids prescribed 2.2 mg/kg given in 2 doses back when we were on meds. Maybe you can get him to follow that protocol. That was also low, imo.
September 18, 2009 at 2:12 pm #63939InactiveIs it 7.5mg ONCE a day? If so, this seems awfully low. I’d check out marci-kids.com and see what the dose recommended for his age/weight would be and then go from there. Babies metabolisms are so fast that that dose would wear off by midday.
I wouldn’t think he would need a increased dose of domperidone. That just doesn’t make sense to me. He’s still in pain b/c he’s refluxing or b/c of his milk-protein sensitivity.My DD did good on alimentum for about a month and then all the milk proteins built up in her system and it was BAD. She needed ahypoallergenicelemental formula(elecare, neocate, nutramigen aa). Have you considered changing his formula in addition to an increased med dose?As far as the domperidone making him hungry, yes it can…BUT…have you also considered it’s b/c of his reflux pain. Some refluxers eat CONSTANTLY b/c they are trying to kill the burn. If his med dose was right, he may not be so demanding w/feeds. KWIM?ETA: Ok, so based on the age and weight you posted originally…marci-kids recommends… 8 to 10 mg of Prevacid delivered 3 times per day for a total of 24 to 30 mg per day. So, I’d say there was a DEFINITE need for med INCREASE.valentine4mommy2009-09-18 14:40:03
September 18, 2009 at 2:18 pm #63940InactiveYes, once a day. My dr was steadfast that this was the correct dosage. I don’t want him to feel I am a better “dr” at knowing what he should get, and I don’t know how to convince him it may not be strong enough.
On the other hand, we haven’t started yet, so we’ll have to see how he does the coming week. We start tonight.
I thought Alimentum was hypo-allergenic! That is why we are on it. or am I confused?
So yeah, I am really hoping this helps more than the compound, at least. And if it doesn;t work, I need to find ways to convince my dr that he needs more, without seeming like a know-it-all. 🙁
Thanks for your imput! Greatly appreciated.
September 18, 2009 at 2:38 pm #63941InactiveCRAP! I had a post that got lost…ugh…
Lets try this again…I edited my last post before I read this…
Now to reply to your new post 🙂 lolYes, it’s hypoallergenic, BUT it still contains milk proteins. They are just more easily digestible. Some babies, a lot on here who are MSPI/MFPI, needed an elemental/amino acid based formula(I mis-typed in my original post). So, maybe consider a change?As far as the Ped and not wanting to step on any toes…Well, sometimes it needs to be done. My Ped sounds a lot like yours. She initially tried everything that is suggested in the NAPSGN(whatever the book is called, lol). Then, after me politely telling her what I wanted(based on my research), she was willing to give it a go. TBH, it helped that I had emailed Dr. Phillips and he was willing to talk w/her. That was all she needed to let us try this higher dose. For my DD, it was what she NEEDED in addition to a formula change. Read up on marci-kids and become knowledgable. Can they really fine you for that?! 🙂 It’s hard at first, cause you feel like you’re stepping on toes, but you know what…You are your child’s only advocate! So, screw them if they have a problem w/you wanting to help make your LO better. Sorry, going on a rant. 🙂Also, I posted about the increase in domperidone & your LOs increased appetite in my last post. He may be over eating b/c he’s in pain. A lot of refluxers eat for comfort, to kill the burn.HTH! Sorry, if the post is kinda all over the place. I was trying to remember everything i had originally posted before it got deleted. 🙂September 18, 2009 at 2:53 pm #63942InactiveOh man, I HATE when that happens! LOL 🙂
I guess I may have to bite the bullet for Sam next week if the low dose isn’t helping and ask the dr ever-so-nicely what we have found. Did you write Dr phillips before you asked the dr or afterwards? I have read up on Marci kids and it all makes perfect sense to me; I haven’t mentioned it to the dr yet, but perhaps next time I will, with some print-outs. In any case, thanks for your help. I also think Sam is overeating from the pain, its pretty obvious now since we did a day off teh domperidone – he ate jsut as much, and he spit up more, so I guess we’ll try the dom again. ARGH!September 18, 2009 at 3:03 pm #63944InactiveI had talked w/the Ped about marci-kids @ an appt. She hadn’t heard of them and was dismissive. So, my next step was to email Dr. Phillips. I then, went back to the Ped to discuss dose/med b/c things weren’t improving w/the intention to bring up marci-kids again. I told her that I understood her views in regards to not being familiar w/marci-kids and that I would feel better if she talked directly w/Dr. Phillips and then came to her own conclusions. She basicly said, “He’s willing to talk w/me?” I said, “Yes.” And she proceeded to write the script for 15mg 2x/day. lol It was that simple. I know not all Peds are going to be that easy, but I think she was willing to give it a shot and if it didn’t work, well then we knew. The thing that Peds need to recognize is that it IS all trial and error. Why not try the increased dose? There isn’t any harm in trying, KWIM?
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