Infantreflux.org | WHAT ARE WE MISSING!

This topic has 13 replies, 1 voice, and was last updated 16 years, 6 months ago by Anonymous.

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April 13, 2010 at 12:29 am #66189

Anonymous
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My six week old is on Prevacid, tried Zantac, hated it, we do a lot of colic calm, it helps him go poo poo, but doesn’t relieve any of the reflux, but sometimes will calm him and give us a few hours of sleep, but he is basically miserable all the time. He cries and has “episodes” up to 8 or 9 hrs a day. We have not yet thickened his formula… I am soo afriad to constipate him, because he seems to already have a hard enough time in that area and with gas as is…. the GI spec wants to put him on reglan too, which I am also afraid of, I have horrible things about it…. any advice on these? I was also wondering about this Simply Thick stuff? is it any better than the cereals? and my pedi said not to do any of the over the counter meds, like malox etc… but the Prevacid, seems to only give him a half a day (at best) of a little bit of peace. What about all the breakthrough episodes? He is on 7.5 mg, once a day. He also chokes horribly which is why I badly want to get this under control… he has been better since he was put on the elecare, but he still chokes on his spit up about three times a day, it is so scarry, he was hospitolized at three weeks because he stopped breathing due to choking, so I fear that happening again if we do not get this under control soon! PLEASE HELP

April 13, 2010 at 7:22 pm #66194

Anonymous
Inactive

Hi there, so sorry that you’re having such a hard time. It sounds like his dose is kind of low as far as the prevacid goes, so maybe your doc would be willing to double it for better coverage. Also, some moms used mylanta cherry supreme for some breakthrough reliev. About the prevacid, how do you give it? Is it a liquid or the solutabs? The liquid needs to made correctly and the solutab given on an empty stomach and followed up with a meal 30-60 minutes later. I personally would not do reglan, and would get a new GI if that’s what mine suggested. that’s just my opinion. But that is such an old school approach, that i’d want a second opinion. About the choking- ask for a modified barium swallow (not an upper GI), done by a speech pathologist or an occupational therapist and that will tell you if he is choking or aspirating and if you need to thicken. My daughter once turned blue from spit up, and we called 911 but she was better by the time they got here. If you’re worried, you may want to get an apnea monitor or angelcare. You may not be able to stop the spit up until he outgrows it, but you should be able to stop the pain. For us, thickening did not stop her choking on her spit up, only on the feeds when they were going down, not coming back up. Good luck.

April 13, 2010 at 11:43 pm #66195

Anonymous
Inactive

We give him the solutabs, they give us 15 mg pills and we cut them in half and then crush them and put them in either a little formula or water and give them to him through a big syringe. Is this ok? It does say not to crush on the bottle, but they do not seem to dissolve very well. What is a swallow test? does it hurt? can a regular pedi do it or just the GI spec? I have out him through so many tests, I hate to do anthing else but I have heard about that several times. Neither one of my docs is willing to increase the dose! I think this is insane… not sure what to do here… Thanks for the help!

April 14, 2010 at 7:00 am #66198

Anonymous
Inactive

You can not put the solutabs in formula! Only water. They need to be given on an empty stomach and followed up with a meal 30-60 minutes later. If you put in formula it will degrade the med, and same if you crush. The beads will not really dissolve, bu don’t crush them. The modified barium swallow is not at all painful. They spike some formula with some barium, and then a speech pathologist watches you feed him, they can trace how it goes down and see the mechanics of the swallow. It will tell you if he’s aspirating and if he needs to thicken. It’s not like the upper GI where they’re strapped to the table which is to look for structural abnormalities.

April 14, 2010 at 7:54 am #66199

hellbennt
Keymaster

please read Prevacid 101
https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

also here’s looking for a ped GI:
https://www.infantreflux.org/forum/forum_posts.asp?TID=660

April 14, 2010 at 12:23 pm #66200

Anonymous
Inactive

wow thanks for that message, i feel terrible for doing it wrong all this time, maybe it will begin working better, the pharmacist is the one who told me to put it in his bottle! i will read the link, but just to be sure, am i just suppsed to soak it for a while before giving it then? do you think i should not try to thicken formula before a swallow test? i am pretty sure he’s not asparating, but i was going to order this simply thick stuff and try it…. to see if it helped the reflux, because the prevacid does not stop it actually coming back up all the time, and i dont want to do the reglan or rice…. afraid to constipate…. have you tried the simply thick? sound like a bad idea?

April 14, 2010 at 3:15 pm #66202

Anonymous
Inactive

I don’t think that simply thick could hurt, but I didn’t use it. You’re right- better than rice, and I personally dislike the idea of reglan! The solutab dissolves pretty quickly, you’ll see the tablet break up into little pellets. I used to put it on a spoon with a bit of water, and swish it around then suck it up with a medicine dropper (the kind from baby tylenol etc) and then squirt it up with the water and give it that way. But I didn’t use it very often, as we used caracream with prevacid. It won’t dissolve fully- will only break up into little beads.

April 14, 2010 at 5:50 pm #66203

Anonymous
Inactive

thanks so much for the reply! ni went to every pharmacy in town today looking for the simply thick, couldn’t find it, i guess i will just order it online. horrible day, he cries soo much…. my GI guy won’t even call me back, beyond frustrating. did put lo on probiotics today… thanks again, he is starting to scream again…

April 14, 2010 at 6:59 pm #66204

Anonymous
Inactive

Hang in there! Probiotics are a good idea. Look for soy/dairy free, ideally. I remember those days…

April 14, 2010 at 8:13 pm #66205

Anonymous
Inactive

Well, I do not want to get my hopes up or anythng, but he has been asleep since I gave him the probiotics, and before then was vomiting at every feed. So I hope that is a good sign. Yes they are EVERYTHING free, I had to special order them at my local health shop and they took over two weeks to get here! It would make sense for them to help right, they are supposed to balance out PH, and isn’t that the whole reason they have reflux anyway… an over acidic PH? I mean not the WHOLE reason, but ya know at least some of it… anyway, I am thinking that just getitng him ont he right dosage will help him a whole lot, because I looked at the dosage chart… he weighs almost 9 pounds…. so that would be 4 kilos, and he only gets 7.5 mg in a whole day, according to the chart he should be getting 18 mg, and that is broken down into three times a day, I feel like that is half the problem, his medicine only lasts a few hours right now, and then I can’t give it to him again, if I could give it to him three times, I feel like he would atleast be able to sleep! I am sorry to ask so many q’s but I guess it is so excitting to talk to anyone about this and not feel insane! Shouldn’t he be getting better on Elecare as well, I was reading about it, form this site and how it is made to actually “heal” things, do you think 3 wks on it is enough to see some “improvement” because the only difference it has made so far seems to be gas…. he has little to no gas on it…. which is great but not enough to justify not atleast trying to BF again. And one more thing… the prevacid already constipated him a lot when we started it, he has just now got back on track…. which causes it’s own slew of problems, which I am sure you know what I mean, so if we up the dose that much how do we deal with the constipation? We have tried adding juice to formula and that cost us a whole night of screaming, we do use the colic calm which seems to help but I don;t know if it will be enough… did you experience this? solve upper GI problems and create lower ones?

April 14, 2010 at 10:30 pm #66207

hellbennt
Keymaster

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have you tried mylanta? try mylanta cherry
supreme or any store brand equivalent, looking at the ingredients to see that
you choose the one w/o any aluminum. it’s the adult kind and safe for
even newborns. give 1ml and see what happens. you can give up to 5mls over the
course of the day & if you see loose stools, just back off some. make sure to space it 4hrs from the prevacid.

as for getting in touch w/ your doctors:

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unfortunately
we have found we must TELL the dr what our babies need…

FAX FAX FAX
the dr

dont wait
for a call…

start off w/
a THANK YOU

keep it
short & sweet

stick to the
facts (no feelings and no rambling emotions)

state
current meds, doses, symptoms

make
request- flat out- short & sweet

THANK AGAIN

follow up by
calling office to say fax was sent

call again
later to discuss requests in fax, ie: have you
called in the increased prescription yet? THANK YOU

sample fax: https://www.infantreflux.org/forum/forum_posts.asp?TID=10633&PID=90325#90325

About faxing the doctor
(& more): https://www.infantreflux.org/forum/forum_posts.asp?TID=2841&TPN=1

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Sheri’s constipation
remedies for non solids baby (solution p2): https://www.infantreflux.org/forum/forum_posts.asp?TID=9263&PN=2

hellbennt2010-04-14 22:32:44

April 15, 2010 at 7:40 am #66208

Anonymous
Inactive

Do you mind me asking which probiotics you are using? Brand?

April 15, 2010 at 7:51 am #66209

hellbennt
Keymaster

Probiotics, brand used:
https://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=1

April 15, 2010 at 12:48 pm #66211

Anonymous
Inactive

wow, that is awesome about the mylanta, my pedi said i couldn’t give it to him, but she did not give a reason! that might be a lifesaver for us! i found a probiotic by Solaray, it is called Baby Life Probiotics. i will have to say, i have only given it to him twice but he is sleeping really well since, and pooping actually! i hope it is helping. he actually slept in the car last night, i know most babies like cars…. mine hates it…. screams his head off every time we are in it. Laura thanks soo much for the tip about faxing too! i will have to get hubby to from the office but it is worth a try. i love being abe to talk to yall about all this! thank you soo much!
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