Infantreflux.org | Is dose OK?

This topic has 15 replies, 1 voice, and was last updated 19 years, 8 months ago by Anonymous.

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January 18, 2007 at 3:08 pm #22602

Anonymous
Inactive

I agree that all kids are different. I know people who have sworn that their child has gotten relief from 7mg a day of compounded prilosec made at 7mg/ml, so that 0.5 mls were given twice daily. In fact, our compounding pharmacy swore to me that they have received so many phone calls and thank you letters from babies who have gotten better on low doses, and “improperly” made compounds. I have no idea. All I can say is that if some kids need more to control their acid, then it should only make sense that some kids don’t need as much.

But if you find that your son isn’t getting relief or is having complications from his reflux, I would certainly go for a higher dose b/c you obviously have quite a lot of room to move upwards. As for the doc saying that your son has a mild case of reflux so he doesn’t need a high dose, we’ve been told the same thing for the last 20 months. All I know is that Hailey’s reflux is worse than most of the kids on these boards and that the low dose did nothing for her. Even when she was screaming nonstop for months, not eating with a full blown feeding aversion, arching/twisting/writhing, choking, turning blue, we were still told by most docs that she had a “mild case of reflux” b/c she didn’t projectile all over the place. I’ve since learned that unless they test to see how bad it is, seeing my child for 5 minutes in the office isn’t enough to classify her as mild or severe.

I hope that your son’s reflux is a mild case, but if it’s not by your standards, then don’t be afraid to ask for a higer dose if he needs it.

January 19, 2007 at 5:41 am #22636

Anonymous
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After joining this forum, I guess it is sometimes easy to look at the dosage the bubs are on and think most need a high dose. But I guess, the type of mums looking for the support of a forum like this are probably struggling a bit at first with the reflux and its associated challenges and then end up here. There might be other reflux babies out there doing well on low doses of meds whose mums never need a forum like this (I actually know one).

After joining the forum and reading about other bubs I would have thought based on Alana’s symptoms she also had a pretty mild case of reflux. But she has ended up on a pretty high dose (30mg) of prevacid just the same. So I guess it is pretty hard to tell just based on symptoms and without the testing.

I hope your little one gets relief but as Lori says, if not you have room to move up. It is really just trial and error in the end (there was a time I felt like Alana was a little science experiment- LOL)

January 19, 2007 at 8:48 am #22645

hellbennt
Keymaster

3 years ago, the more ‘conservative’ higher-dose approach was 3mgs per kilo (marci-kids was in existance, & we did get to those doses, but my ped GI considered 3mgs per kilo to be on the ‘higher’ side of dosing)

so, even if your dr won’t increase to marci-kids recommendations, there’s still room to increase to 3mgs per kilo, which in your son’s case, would be 13.5mgs total for the day…

HTH

January 19, 2007 at 9:26 am #22649

Anonymous
Inactive

I do believe that there are different severities of reflux, & it depends on the child as to what dose and what medicine they need. My little sister had a baby in October and when she described some reflux-like symptoms to me, I told her to go to the doctor and get him on a PPI. She went to her doctor, and they prescribed Mylanta…not even Zantac. I was surprised, and told her that she might end up needing something different & to watch him. BUT, he has done fine on Mylanta only! So who knows – some babies need really high doses of PPIs and some don’t even need a PPI.

Hopefully the low dose will be enough for your baby. Good luck with it.

January 19, 2007 at 10:17 am #22661

Anonymous
Inactive

Thanks for all your responses, I really appreciate you taking the time to respond.

I have had a bad couple days as Jack went off axid and on prevacid. The axid was helping although not completely so we switched to PPI. I think the axid is now out of his system and he is in pain waiting for the ppi to work. He barely slept in the past 2 days and is moaning in pain every 5 minutes when the acid comes up. I am starting to question whether he has reflux and not something worse. I cannot see the light at the end of the tunnel right now. All I know is my boy is miserable as I sit here and wait for meds to kick in.

Now I’m worried that there is a possibility that the ppi won’t even work?

How did you guys get through the waiting-it seems endless??????????????????????

January 19, 2007 at 10:26 am #22665

hellbennt
Keymaster

give the axid!

(check out groupie intro- I wrote about giving zantac while waiting for PPi to heal/work)

just make sure to give hte axid 2-5hrs seperate from the PPI. our ped gi said 2hrs & that’s what we did- others’ ped gis have told them up to 5hrs…

January 19, 2007 at 10:50 am #22668

Anonymous
Inactive

I gave him the axid-one more question-How will I know when ppi kicks in?

January 19, 2007 at 11:01 am #22671

hellbennt
Keymaster

oh, you’ll KNOW!!!

no, really it’s THAT obvious.

it was day 12 for Jonah. I remember all of sudden knowing that it was working because all of a sudden I had a different baby

January 19, 2007 at 11:27 am #22675

Anonymous
Inactive

So Jonah had the correct dose from the start???

January 19, 2007 at 11:37 am #22679

hellbennt
Keymaster

he didn’t start out on the correct dose- my doctor went by prevacid dose being 1.5-3mgs per kilo, so he probably started out on maybe 2mgs per kilo, but his reflux was so bad that we could tell that the PPI was working…he was on zantac and it wasn’t doing anything- I had a shrieking/howling (24/7) baby on my hands who had sandifer symptoms- turing his head to the side, arching, having what looked like weird trance/seizure activity… . I couldn’t put him down (that’s how I discovered babywearing!) . oh the nightmare! w/ the PPI, on day 12 he was still miserable, but there were actually times when he wasn’t shrieking and when he would actually sleep without waking up howling…the sandifer symptoms weren’t as severe/often. he was put on a pretty goood dose at first. I found this site and so then once I saw that the ppi was working, I knew it could get even better! so I FAXED my doctor, thanking him, then stating symptoms, then stating meds & dosing, then just flat out stating what hte dose should be for his weight and requesting an increase. I got it…there was a time that he needed more for every little weight gain…

January 19, 2007 at 11:47 am #22685

Anonymous
Inactive

OK-thanks!

I think Jack has sandifers as well, he turns his head to one side a lot and will try and bend his head back so far for relief and he also straightens out his whole body. However, he doesn’t cry perse but just whines, turns his head from side to side, turns red and moans. I have been on the elimnation diet for 2 days and haven’t had dairy for 9 days and no improvement. My little guy is OK in the tub and if I walk him around and move/dance he seems better. He can fall asleep but wakes up 5-30 mins later from the pain.

I will keep you posted

January 19, 2007 at 11:59 am #22687

hellbennt
Keymaster

at 10lbs that’s (divide by 2.2) 4.5 kilos

4.5 x 1.5 (lowest dose that would even maybe do something) = 6.75mgs a day & your baby is getting 7.5 (try splitting it up- babies have fast metabloisms- your baby is probably zipping though the dose?) so it’s not the lowest of the low…

so maybe maybe you’ll see some results with the 7.5mgs… but, from what you describe, especially the sandifer’s (yes that IS sandifer’s & USE THIS when faxing the doctor- forget phone calls!) I’d make an educated guess that your baby needs more…

I’m not even sure if the I’d do the elimination diet while baby is on such a low dose? hard to say…what are his stools like? mustardy seedy breastfed baby stools? or green and mucousy (stringy?) or green and watery? or green & foamy?

January 19, 2007 at 1:51 pm #22694

Anonymous
Inactive

I have an appt with the doctor on Monday and I am bringing all the information from the MARCI website.

I will try splitting the dose, that is what concerns me the most because I know babies metabolize 2-3x faster. I actually gave him 15mg total yesterday because he was so bad. I think I am going to continue to do this and just tell her on Monday.

His stools are yellow, seedy-BF type stuff.

January 19, 2007 at 2:05 pm #22695

Anonymous
Inactive

What about the full meal thing-Jack does not each 6 oz at a feeding-maybe 2 since he eats so often (for comfort). Do you think this would effect efficacy?

January 19, 2007 at 5:06 pm #22703

Anonymous
Inactive

Myles was also only taking 2 ounces per feeding when he first started Prevacid. I worried about the full meal thing too. Fortunatley he still got enough relief and eventually he began eating bigger meals, though even with pain relief he was never a big eater. His typical feeding was 4-5 ounces.
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