unsure about ped's comments vs marcikids info

[Anonymous]

hi all. today we had our appt with dd’s ped, re: 2mos shots and updates on her reflux. we have been taking zantac for about 5 weeks now, and have upped the dose from 1ml BID to now 2ml BID. as she’s gained weight, the zantac has stopped working, etc etc you know the drill.

SO. i went in today thinking that i was going to advocate hard for a ppi, b/c the ped suggested to me thickening her feed first before trying a ppi. since i exclusively breastfeed and she is only 2mos, i really didn’t want to start pumping and giving her cereal, plus everything i’ve read seems to suggest that thickening feed is ineffective overall. well, he didn’t seem to really LOVE hearing about all of my “internet research”, and said that from his experience, thickening feed was indeed helpful, and that for someone so concerned about my daughter, he’d think that i’d be willing to try thickening feed before wanting a ppi, b/c there’s so little research done about how ppi’s can affect babies, and so on..

anyway, he did end up giving us a script for zegerid, 20mg oral pack powder. said to mix contents with 30ml of water and give 7.5ml once daily in the morning. he said that we’d have to eyeball the content of packet to divide in half, since the med would lose it’s stability if we mixed the entire contents and tried to give the other half for the next day’s dose. i’m wondering how, for a 9-week 15.5lb baby, is that dose high enough to be therapeutic? i’ve read a lot on here about how doses are often lower than needed, which i mentioned to him, and he assured me that her dose was fine.

he then went on to say that he was referring us to a GI. there is only ONE GI on the entire island (we live in hawaii), and he said to be forwarned b/c this GI was very pro-mylanta. i was like “what?!?” pro-mylanta?? feels like going backwards!

also, he said to not give her zantac and/or mylanta once we start the zegerid. he said no need to give her all those meds when the zegerid will stop all the acid from being made. at this point near the end of the visit, i was not anxious to bring up yet more of my silly internet research and tell him that i’d understood from marcikids that giving an h2 or mylanta with a ppi was fine as long as they were spaced far enough apart.

overall, i’m just kind of depressed about the whole situation. also, it seems like everyone else’s GIs and peds on here give drppi’s, and it made me wonder why he gave zegerid instead of prilosec or one of those.. not that i’m complaining, but i’m just wondering. i know, i should have asked him. but i felt that he was annoyed with me, although he did maintain a pretty good demeanor the entire time…still, i could read his annoyance.

sorry this is so long.. i guess i’m looking for any insight anyone may have.. sigh

p.s. he also said to wait 2 days to start the ppi, b/c she had all her shots today and she could be fussy as a result, and it would be hard to gage the effectiveness of the ppi b/c of that…marinaew2009-01-14 19:35:50

[Anonymous]

i forgot to add.. he’s a younger doctor, and studied in the midwest, so was familiar with marcikids..in face, he was already familiar with the name of one of the doctors from marcikids, and seemed very confident in everything that he (the ped) was saying today.. even though much of it didn’t seem to correlate with what i’ve read here.

also, he says he does not think that there is a mspi or dairy allergy thing going on. he says “i think this is just reflux”. i said “yes, it is reflux..but i thought maybe also a dairy allergy might be making it worse?” he didn’t seem concerned about it. advised that TID was unnecessary, and said that me worrying about things like milk whey in hamburger buns was excessive in terms of cutting out dairy.marinaew2009-01-14 19:39:54

[hellbennt]

well, the good news is that zegerid is GREAT!

I would email dr philips about the CORRECT way to mix it up & administer it, though. also naomi, ben’s mama, can help

as for giving the 2 meds, do what YOU think is right- to be honest, I learned the HARD way, as I had the same concept of ‘all of these meds in my baby?!!? no way!’ and so I did not give zantac, too, and so it was like jonah wasn’t on any meds at ALL as I waited for the PPI to work- well after a terrible 24hr period of non-stop shrieking/howling he lost his VOICE and I FREAKED OUT (who wouldn’t? it was so pitiful!) and called the dr and was told that YES I could give the zantac, too. so anyway I just tell people this so that they might avoid what my baby actually went through. his reflux was SEVERE.

[Anonymous]

I’m so sorry you had such a disappointing experience. I can definitely relate w/ the diet/TED stuff. My general ped & ped GI are very supportive NOW, but in the beginning both said it was completely unnecessary. Of course, now they both realize that there really was no other way & how incredibly it helped Evan.

Anyway…

I don’t remember (sorry, I’m not that good w/ remembering ppl’s info unless you add your name & your db’s name @ your signature) – what’s your db’s diapers look like? Mucous? Stinky gas? Color? I know you’re doing some diet things but don’t remember what or why…

If there is some diaper issues & you suspect MSPI or MFPI then you certainly DO need to be aware of all hidden dairy. Any milk PROTEIN will most times affect the LO. I just want to lend my support b/c you are doing what you think is the best (& necessary) for your db & who cares if it IS excessive (which, btw I don’t think it is).

Sorry for the rambling… I just get annoyed when drs or nurses balk @ TED (or any diet modification). Just yesterday my ped GI’s nurse pract. said “you can’t eat JUST that”… uh, yes I can & I have been for over 6 mths now. Ok, rant over.

I personally, would start PPI now not in 2 days (b/c your dd will be even more miserable reflux & intolerance wise due to shots most likely) & continue Zantac & Mylanta for 2 wks.

Also, did you check the Zegerid dose w/ marci-kids? Was it indeed low?

Sounds to me like you might be able to work w/ this ped but he might need some pushing… like some faxing of marci-kids info to increase dose, etc. This was the case w/ my general ped as well. My ped GI helped us w/ many things w/ Evan, but medication was not one of them.

HTH some & hopes it all makes sense. I was doing like 3 diff’t things while typing this so it might be a bit jumbled-lol.

Hang in there…

[Anonymous]

thanks, guys. i feel like everything that i’ve felt and done up until this point has been the right thing. up until she was diagnosed, everyone just wrote it off as “oh, she’s colic”, or said she was just a fussy high needs baby…which she is, but obviously for good reason.. lol

anyway..i feel stupid, but to be honest, the whole dosing thing is confusing to me. the ml, mg, kg to lbs.. i’m just dazed right now. but i’m also sleep-deprived. hopefully dh (who is much better at grasping math lol) will understand how to dose correctly. i can’t read her script (zegerid 20mg oral pack, mix with 30ml water and give 7.5ml once daily in morning), but here is what marcikids site says for my lo’s weight and age:

Your child, who is 2 months old and weighs 6.8 kg, should receive a dose of 9 to 12 mg of Zegerid delivered 3 times per day for a total of 27 to 36 mg per day.

i do see that they are saying to give it three times a day instead of once in the morning. i don’t know if i’ll be able to convince dh to go against doctor’s orders when it comes to a medication like this. sigh.

[Anonymous]

Hey there! We used Zegerid with great success, but it did take a really high dose (marci reccomended dose) for my little guy to feel comfy.

From what i remember (we used 40 mg packs instead), you actually need to mix the pack with only 6.5 mls of water. You end up with a total of 10 mls of medicine at a 2mg/ml ratio. This way, you won’t have to syphon so much of the liquid into her.

The downside of the 20 mg packs for SOME, not all, is that the high sodium bicarb in the packs makes some babies sick to their tummys. My little guy would just spit it all back up or would have bad tummy cramps, so we switched to the 40 mg packs. BUT, there are several moms on here who used the 20 mg packs just fine.

It does seem like you are going to need to try upping the dose, BUT I would just stick with where you are now, BUT keep giving the Zantac and Mylanta as well. There is no way one dose at 7.5 mgs is going to last your dd 24 hours. Their metabolism is so fast, she will run through it in a few hours.

It IS very confusing and overwhelming. I remember it well, and the sleep deprivation doesn’t help matters. Hang in there though. You are certainly on the right track.

[Anonymous]

well, we gave her the 7.5ml dose this morning, following the script’s instructions which say to mix it with 30ml of water. she is screaming in pain from reflux right now. i also didn’t give her zantac this morning, per doc’s orders to stop giving it when starting zegerid. i’m wringing my hands right now b/c i don’t now what to do. i want to just give her zantac right now, but dh just gave her mylanta, so i have to wait.

i cannot contact the ped until monday, if that, so i have to figure out what i’m going to do now. i’m thinking i may just put her back on the zantac until i can figure out how to dose the zegerid. i’m getting confused reading marcikids’ site, and i’m afraid i’m going to dose her wrong.

if it says i should give 9-12mg of zegerid 3 times a day, how do i mix a 20mg packet? i’m tripping out right now b/c if i understand this right, her prescribed dose is 7.5mg once a day, but marci says to give MORE than that, 3 times throughout the day..>? how can the doc’s dose be so low, how could he not know she would need more than that? i’m so frustrated right now. also, marcikids site says to mix it with much less water than what the instructions say..

i trust the ladies in this forum more than i trust the doctor right now. i’m SO DONE with this.

[Anonymous]

i just emailed marcikids per your suggestion..waiting on ped to call back (i guess he is in the office today after all)..i know the ped will not agree to giving her the dose that is recommended by marcikids, though.

[Anonymous]

Ok, here’s how you need to mix it. Take your 20 mg pack and mix with 6.5 mls of water. This will give you a total of a 10 mls solution. You will have 2 mgs of Zegerid in 1 ml of the solution (2 mgs x 10 mls of solution =20mgs.

So, if you are wanting to give her say 10 mgs for each of her doses, you would give her 5 mls of the solution that you mixed. Does that make sense?

Save the other 5 mls in the refrigerator for your next dose. It stays stable for 21 days.

[hellbennt]

you can give the zantac, too! really. just give 4hrs seperate from the zegerid. you need to space the mylanta 4 hrs also from the zegerid (unless you’ve been told to use it to mix w/ the zegerid & in that case listen to the people who know zegerid more than me!)

you CAN give mylanta AND zantac at the same time, though, not to worry

[Anonymous]

thanks, ladies. i finally understand the dosing now, lol. when i get stressed and strung out, i can’t wrap my mind around anything. it’s terrible.

the only thing now is, ped doesn’t want to up her dose. if i DO go ahead and dose her this way, it’s against his orders. and that means we won’t be able to keep getting the scripts from him, as we’ll run out way sooner than expected, and not get refills..we could get away with it for a month or maybe two, but eventually this would come to a head when we needed more meds.

yesterday when we told him that we’d stopped the zantac and given her the small ONE dose of zegerid, and she had horrible reflux, worse than we’d seen since before we started any meds, he said “go ahead and keep giving her zantac for one week with the zegerid dose, and then we’ll wean her off zantac”. he thinks it was just a shock to her system, and that the zegerid dose is fine. i think he’s uninformed and doesn’t know what he’s doing with ppi’s and infants. dh was the one who talked to him on the phone, and he wasn’t brave enough to bring up the info we’ve learned on marcikids, so i guess i’ll be bad cop again and call him back and try to present him with this information and ask him to at least CONSIDER why it is that these institue doctors are recommending like, 3 times the dose that he believes is “therapeutic”.

i also find it interesting that he didn’t tell dh to space the zantac out 4 hours, or at all. just said to keep giving it with. this just further underlines to me the fact that he is not privy to all the information that he needs to be.

i know people are going to wonder if we’ve thought about getting another ped, but we’re limited to choosing a doctor within kaiser permanente’s network of doctors, and the ped that we have now if supposed to be one of the best ones they have. plus, i don’t know how i’d go about finding out if another ped was more pro-ppi.. is that something you can even ask up front, and they would be able to tell you “yes, he/she will give you a higher dose of a ppi for her”..

so for now, we’re thinking what we may do is just double up on the zegerid dose, because we can get away with doubling it without running out of the script suspiciously early, and keep giving zantac 2ml BID.

ladies, really, thank you for coming in here to help me with this, even if it’s just sorting through my thoughts for now.

[Anonymous]

One other consideration is to go to your family doctor. They are often much more comfortable with PPIs because they give them so often to adults. Many moms on the boards have had better luck there than with the pediatrician.

[Anonymous]

Bensmama wrote: One other consideration is to go to your family doctor.  They are often much more comfortable with PPIs because they give them so often to adults.  Many moms on the boards have had better luck there than with the pediatrician.

thanks for the input, and i would love to do that.. but we don’t have a family doctor..i have an ob/gyn, and dd has the ped.. but we are with kaiser, and that means that we would have to have a kaiser doctor for a family doctor, and i’m pretty sure they’d tell me that dd has to see her (kaiser) pediatrician. they’re all in the same building (all the doctors), like a big office/hospital/pharmacy all in one. i feel like we’re stuck because of our insurance.

i gave her the 20mg today mixed with only 6.5ml water.. she definitely hated the taste of that much more than the diluted mixture. dh and i have decided that we’ll give her the small 7.5ml once daily with her zantac for a week, and then just watch her be uncomfortable as he tries to wean her off zantac. the minute her symptoms return, i’m going to be all over him to up her dose. i’m afraid that if we do it our own way without his approval, he will completely shut us out, or even tell us to find another ped, which again, b/c we’re stuck with kaiser, we’re completely limited to choosing another ped with them.

[Anonymous]

It is possible to also give her a ml or so of Mylanta with the Zegerid to help disguise the taste. We did this for our son, and it really does help with the saltiness of the Zegerid.

[Anonymous]

so the mylanta mixed with the zegerid solution doesn’t disturb the stability of the zegerid?

also, it’s okay to mix saved/refrigerated zegerid solution at 2ml/mg with newly mixed dose?

thanks!!! if i make it out of this with my sanity intact, i will be happy to spend time on here comforting/helping other reflux mommies!!

[Author]

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