Infantreflux.org | have mercy

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October 25, 2006 at 1:32 pm #16569

Anonymous
Inactive

I apologize for the length…

Grant is nearly 7 months old and we are having very serious problems with his reflux. We are about to have his 15 mg prevacid script refilled but were hoping for a higher dose before we do. Here are his symptoms:

q Grant is nursing every 2-3 hours daytime and every 3-4 night hours.

q He rarely takes more than 2 ounces even if we spend an hour trying to burp him.

q He shows an incredible resistance to burping.

q When he is burped, it comes up sounding harsh and forced like an adult intentional burp.

q He screams through all solids even if they are foods we can tell he likes (sucks them off the spoon).

q He arches his back and crawls off of breast at every feeding except those at night so he must be wrestled through each daytime feed.

q His incessant crying is limited to contact with food as when he plays he is quite happy.

q Mylanta doesn’t seem to help him at all even when we have given it before each feed which is not easy as he screams while we hold him down to give it to him.

q 15 mg prevacid doesn’t seem to help at all even when we have tried splitting the dose am and pm for better coverage. In addition, it must be given on an empty stomach and he eats so often this is hard to time.

q He cannot ride in a car seat unless he is given 5 ml of Mylanta before the ride and again before he gets into the car to go home.

q His weight is still good because he is nursed an hour and 30 mins every feeding every three hours and through the night as well. He gets enough to wet his diapers but pecks at the breast all day because he is clearly still hungry.

q The breast milk supply has dwindled with this type of behavior and is now around 2 oz per feeding with 6-8 feeds a day. It is difficult to give him prevacid when his stomach is empty since the feeding schedule is so frequent.

q Mother is on reglan (a re-lactation drug) to help keep supply up, drinks fluids constantly and had tried pumping to stimulate supply as well.

q We have also tried health store remedies such as aloe vera in his foods or before nursings and it does not work as he still holds down his burps and glugs down air, stopping feeds.

q He cannot handle a bottle as the liquid comes out too fast even from a newborn nipple and gags him. Everyone in our family has tried it.

The other child here is barely getting any care at all for how this younger child is taking over…needless to say and I know I’m preaching to the choir but no one is sleeping either… plus we’re 1 week post double inguinial (groin) hernias which seems to have helped but not anywhere near as much as we were hoping!

Doc won’t go up to 30 mg prevacid (weighs 17 lbs at nearly 7 mos old) so we’re stuck with 15 mg. If I supplement with mylanta and zantac (against doc’s orders but I still have the script to go and refill) how much/how often can I give on top of splitting prevacid am and pm? Do you guys think that it’s going to help? Should I go out of state for help? anyone know of Dr. James Webb in Texas??? Our local GI doc is X ray happy and doesn’t approve of mylanta… Have mercy I am about to lose my mind…

October 25, 2006 at 1:51 pm #16573

Anonymous
Inactive

I would definitely look for another doctor. 15mg is a very low dose. Myles was miserable, fighting every feeding, impossible to burp, never at more than 2 ounces at a time and like you described, screamed incessantly with every feeding; solids or breast milk. As soon as he was on 30 mgs, things turned around and he’s been fine since.

Some moms here have had success by calling Dr. Phillips himself (at http://www.marci-kids.com and asking him to call their doctors about Prevacid or Zegerid dosing. I’d try that and if that failed I’d find another doctor even if it meant traveling out of state. I came close to doing that for Myles since the only Ped GI. in our state has a lousy reputation. I got lucky though, and was finally able to convince my family doctor to prescribe 30 mg by faxing her the marci-kids info.

That’s another idea, some moms here have had better luck with family doctors…they seem to know more about reflux and reflux meds. Do you have a family doctor you know and can take him to?

I was a pumping mom since my refluxers would not nurse. I had to pump at least ten times per day to keep my supply up. Pumping in the wee hrs of the morning helps a lot because that’s when supply tends to be the highest. Also, try to pump 2-5 minutes after the milk stops flowing…that tells the body to produce more.

Good luck. I hope you find some relief for son soon.

October 25, 2006 at 1:54 pm #16575

hellbennt
Keymaster

ok, first I’d try to find another doctor…

in the meantime, maybe ‘pick’ the time of day when reflux is at its worst (am or pm) and give the whole 15mgs then? and use the zantac & mylanta throughout the day…

zantac:

Pediatrics: Oral doses of 6 to 10 mg/kg per day in two or three divided doses maintain gastric pH>4 throughout most of the dosing interval

from https://www.infantreflux.org/forum/forum_posts.asp?TID=836

as for an empty stomach, try to get caracream? (1. find small, non-chain pharmacy, like a hospital pharmacy or just a small local pharmacy & ask them if they use FLAVORX brand flavorings for mediciines 2. if ‘yes’ then find out the name & contact info of the pharmacist 3. contact marci-kids, tell them you want caracream, & give the contact info; they’ll help you the rest of the way)

try babywearing? at 7months you can nurse upright in a Mei Tai (or ring sling or wrap )and be able to spend time w/ your other child ‘Babywearing Condensed’ : https://www.infantreflux.org/forum/forum_posts.asp?TID=4404&a mp;a mp;PN=1&TPN=1

next; a conservative amount of prevacid for his weight would be 23mgs a day. not to take matters into your own hands, but that’s a pill & a half…would this ‘mess’ up the amount you can get refilled,etc? hmm…

October 25, 2006 at 1:57 pm #16576

Anonymous
Inactive

If you’re in Texas, then PLEASE go see one of the GIs at Cook Children’s hospital in Fort Worth. We drive 4.5-5 hours to take Aidan there, but trust me, it is SO worth it. We’re currently seeing Dr. Nicholas Ogunmola there, and he is fantastic! He listens, and really understands what you’re going through. His daughter had reflux also. Serioulsly, if you’re having problems with your specialist, please consider going to Cooks.

October 25, 2006 at 2:03 pm #16578

Anonymous
Inactive

has he had any testing done?

October 25, 2006 at 3:50 pm #16584

Anonymous
Inactive

great suggestions.

i am putting a good fax together now.

babywearing isn’t working as he is climbing out of the pouch!!!! in so much pain he prefers standing to sitting!

haven’t done any procedures-we’ve seen all this before and despite our wishing and hoping it’s classic reflux. i don’t ever want to have a baby wear a ph probe again-off meds 2 weeks before and a strangulation cord for 24 hours-no thank you!!!!!

which is better-mylanta and zantac mixed (use for day) and 15 mg prevacid at night

or

30 mg prevacid split am and pm?

or do i need the 30 mg prev and the mylanta zantac mix?

Laura-what does caracream do for the empty stomach?

haven’t had much luck seeing adult docs or family docs here for this. they wanted us to go the the only pedi GI here. that texas group has one doc who got so fed up here he left and went to texas! wish i could handle travelling that far. maybe it will come to that…

thank you all so much for being here. what a wonderful place this always is! 😉

October 25, 2006 at 4:12 pm #16588

hellbennt
Keymaster

JamesonMom wrote: which is better-mylanta and zantac mixed (use for day) and 15 mg prevacid at night

or

30 mg prevacid split am and pm?

or do i need the 30 mg prev and the mylanta zantac mix?

Laura-what does caracream do for the empty stomach?

until you can get a doctor’s ok &/or another dr., I would try the 15mg of prevacid, that you currently have, at night and try the zantac & mylanta during the day…or, if you feel like it (I don’t recommend going against your doctor) try some combination of a pill plus a half of a pill (22.5mgs) split into 2 doses, given 2x a day with zantac as needed…

caracream makes it so you can give the medicine any time- it’s a form of compounded PPI; it’s the predescessor to Zegerid

October 25, 2006 at 4:51 pm #16590

Anonymous
Inactive

hi Laura-you should be paid!

i don’t have enough pills to do the split without running into next month’s supply. (taking things into my own hands is becoming routine instead of brave behavior!)

does the caracream itself alleviate pain from reflux or just make it so you can give meds at any time? or both? if i get caracream-do i use it instead of mylanta for both prevacid and zantac? does it cause motility problems like mylanta does?

October 25, 2006 at 5:23 pm #16591

Anonymous
Inactive

caracream is a buffer that you mix with either prevacid or prilosec which makes it like zegerid-an immediate release suspension, given at any time even with formula. its just like a PPI enhancer, you dont use it alone.

nataliachick72006-10-25 17:24:39

October 25, 2006 at 5:35 pm #16592

Anonymous
Inactive

So you mix mylanta with zantac and prevacid with caracream. Got it.

I just emailed marci kids with all our info.

Wish us luck.

ps. I know I should have all this down for the second round but the oldest child was diagnosed so late we were into sippy cups and past nursing with him. neocate and 30 mg prevacid did the trick. he was already big enough to justify the higher dose.

October 25, 2006 at 5:38 pm #16593

Anonymous
Inactive

JamesonMom wrote:

So you mix mylanta with zantac and prevacid with caracream. Got it.

no! you do NOT mix zantac and mylanta with caracream! caracream is for PPI’s only!

October 25, 2006 at 5:41 pm #16594

Anonymous
Inactive

Oh, two more questions..

will we still need zantac if we get the zegerid or 30 mg prevacid?

can we use caracream with the break open capsules of prevacid? (solutabs have dairy)

thanks!

October 25, 2006 at 5:44 pm #16595

Anonymous
Inactive

yes i used caracream with prevacid capusels-caracream is for capsules only.
also, if your child is on an appropriate dose of PPI, you no longer need zantac, because their willl be absolutely no acid production.

October 25, 2006 at 5:53 pm #16596

Anonymous
Inactive

no,

i meant mylanta is for zantac…

and caracream is for prevacid!

i am sleep deprived though and certainly need all the clarification i can get!

October 25, 2006 at 6:01 pm #16597

Anonymous
Inactive

There’s no way I’ll get 45mg perday from our doc!!!!

This is what I just got from Dr. Phillips:

Grant needs the following:
We treat hundreds of children with GERD here at the University of Missouri. They respond extremely well if dosed appropriately. I am going to provide you with some information on PPI drugs (such as Prevacid) and dosing in children specifically for Grant.
Children around Grant’s age (4 months to 10 months have the highest elimination of the PPI drugs) they eliminate the drug 3 to 5 times faster than adults. Adults receive 1 dose per day, Grant needs at least 3 doses per day (I am a Pharmacokinetics professor – it really is that simple).
Children have a larger volume of distribution for the PPI drugs and thus they need 1.75mg/kg/dose to 2mg/kg/dose of Prevacid to fill their system with enough Prevacid at each dose to reach a therapeutic effect – if you don’t give enough you don’t get the desired effect (if you use too little you don’t get some effect you just don’t get the effect at all).

So there you have it: Your Grant needs 12 to 15 mg three times per day.
Note: Zantac will prevent the Prevacid from working
Zegerid is the drug of choice as it is a true liquid with no little granules.
CaraCream EZ Mix is an alternative for using Prevacid to make a true liquid. Your doc needs to write for 15mg three times per day to get an effect that will markedly help Grant.

Dr Phillips
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