Concerned Father

[Anonymous]

Natalia,

I have checked the Marci-Kids site. What is the conversion for their suggested dosage. For example, the site says 1.5 – 1.75 mg/kg 3 times per day. What does that convert to with our current compound of 3 mg/ml?

[Anonymous]

well you can give me your childs weight. ill turn the lbs into kg.

and fyi-

you can also go to the calculator. choose any form of prevacid. put in your childs weight and height, and it will give you the dosage in mg.

nataliachick72007-5-15 20:42:39

[Anonymous]

My guess is he’s outgrown his dose, since it was on the low side to begin with, and/or the compound is losing stability. That’s great that it worked for 3 weeks, though! That means all he probably needs is the right dose of Prevacid, compouded properly and he will be fine.

I’d try the dosing calculator at http://www.marci-kids.com

[Anonymous]

I am so glad to hear that for a few weeks things were better. I can’t begin to tell you how great that makes me feel. I have been to other reflux forums that just plain make me sad. Those poor babies and parents are going through H*** and feel like there is no hope. Thank you for letting us know that things are getting better. I agree with Christine, it sounds like the dosage might need to be increased. I noticed with Justice that in the begining we had to increase it more than I had hoped. After awhile though, we stayed at the same dosage until he outgrew his reflux at 9 months. We would increase his dose ourselves 1 ml at a time until he had relief. When I say that, I mean if your giving it three times a day, and your giving 2ml then give 3 ml . So, 1 more ml for each dose you give. I am no expert though. That is just what we did. I think it takes a few days for the increased dose to kick in. That was zegerid though. I don’t know if prevacid is the same. I also don’t know anything about compounding. So, it is always possible it is that too. I just know for us it was usually that we needed to increase the dose.

Let us know how it goes.

[Anonymous]

It has been a few hours since I last posted and I feel like I needed to repost. The reason I say that I always increased meds myself is because it is so hard to get the drs. to give a high dose anyway and they are probably not very likely to give the go ahead to increase the meds. It may take weeks to get them to finally give in if even then. So, I always just did it myself. I did try to talk to dr. Phillips about the increases though. I just felt that I needed to say that.

[Anonymous]

It sounds like he’s on 7.5ml a day. You last posted his weight was 11 pounds, assuming he’s up to about 12 pounds now (about 5.5kg) then he’s getting around 1.4mg/kg/day.

On to your other question, if you kept your compound unrefrigerated while you were travelling (especially if it was out in the sun) then it’s quite likely that it did become unstable. How long were you away for?

[hellbennt]

my little jonah outgrew his dose very quickly at the beginning…

so it is possible that is the culprit…I would first address the stability of your compound & then I would address the need for a dose increase…

[Anonymous]

I agree with Laura. Hailey started off on 7.5ml once daily of compounded prilosec and it didn’t do much for her. It helped a bit, but we had a couple of decent days followed by a string of not-so-great ones, and things were never really where we wanted them to be. I personally didn’t like the compound just because it never really did the trick for Hailey even when our dose was quadruple our initial dose, and it wasn’t until I stumbled upon this site that I realized it wasn’t being made properly and I couldn’t get anyone to make it properly.

There have been many kids around who have done well on compounds and also kids who have done well on lower more conventional doses of PPI. But there’s also a lot of kids who don’t get relief on conventional dosing, which tends to be on the lower side, and some of these kids don’t get relief, but are lucky not to have complications until they outgrow it, and others are not so lucky and either don’t outgrow it so fast (so they suffer for a longer time) and/or have complications.

If your son is not doing well on the dose that he’s been prescribed, then I would certainly try to go for a higher dose, because his dose is on the low end. Your GI sounds quite conservative in his dosing. I’m sorry to hear that he wouldn’t go higher. Hailey really didn’t get relief until she was on 30mg (and even then things weren’t perfect but she was much better), but we had a horrific time trying to get a doctor to prescribe it for us. The problem is that marci-kids dosing is definitely the highest out there, and they are higher than a lot of the other research/recommendations/standards that are out there. I do believe that their dosing works though, and I also believe that PPIs are quite safe meds, and that it’s worth it to go as high as you need to in order to get relief.

Good luck.

[Anonymous]

Just another thought… do you think that you’d be able to time the meds around meals? Because the solutabs have worked really well for a lot of people.

[Anonymous]

Qman- I noticed someone posted some info re: Nemours Children’s Hospital in Orlando. We took Evie there(we live in Melbourne) and they were adamant about marci.kids dosing (22.5 mg/day for Evie) being “way too much.” They actually told my ped. to not prescribe me the 15 mg stating that that was ‘absurd’. The nurse was extremely nice and helpful but just didn’t agree with the marci-kids dosing. Maybe you could convince them though!!! We ended up having only MSPI so it didn’t really matter, but maybe you’ll have better luck!!!

[Anonymous]

Just my 2 cents… I agree with Lori, if you can wait the 30 mins before eating, I think the solutabs are the way to go too. I never messed with the compound- seemed like noone knew what they were doing from what I heard others say.

15 mg was great for my first son, and did nothing for my second. We actually went up to 30 just to get some relief. After that seemed to do the trick and everything was healed up, we realized he also had MSPI. We started a hypo formula and he is able to do 22.5 mg of the prevacid now. Last week we tried to go back down to the 15 and in 2 days he was a sleepless grouch again…

Hang in there, you will get this reflux messed solved!! Promise!!

Tina

[Anonymous]

Hi all, wow, this board is just incredible. Our little guy has had silent reflux so keeping his food down has never been a problem. At 8 weeks, he is over 16 lbs now. Even though we will be picking up new prevacid today, I am sure it is that he has outgrown his dosage.

I will look at increasing the amount myself and see what happens. I will keep posting to let everyone know how things are going. Furthermore, my wife and I will pray for those out there that are still struggling. Had we not found this board, we may have just given him back. Is that possible?

Thank you again!

Qman

PS – My wife is making me write that he is not fat, just big. 😉

[Anonymous]

Qman wrote:

Had we not found this board, we may have just given him back. Is that possible?

PS – My wife is making me write that he is not fat, just big. 😉

LOL, Qman! That’s hilarious!!! Sadly, there were times when we had thought about a return policy (just kidding, Hailey).

And great news about the weight gain! Given that info, there’s got to be room to move upward.

[Anonymous]

LOL!!!! I needed a good laugh!! I can tell you, I looked several times for the receipt to take Sarah back! I thought for sure I must have taken the wrong baby.

I agree…I think Joshua has probably outgrown his dosage and I hope you are able to get it increased. It seems like it was working GREAT for him, which is such great news!!! GOOD LUCK!

[Anonymous]

I often say that the reason the good Lord made babies so cute is that we’d all give them back if they weren’t. So of course, our reflux babies are the cutest babies out there!!

[Author]

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