grace’s results

[Anonymous]

Hi everyone, just wanted to say that i am so pleased with this site and couldn’t ask for more support well grace went to her gi specialist on thursday. he put her on prevacid 30 mg w/sodium bicarb i give her 1.5ml 2xday. she started yesterday, so i am hoping that this will be the miracle drug the pharmacy gave it to me in a liquid suspension. he also said to stop the zantac in a couple of days, and she is still on the reglan but he may take her off it because he doesnt; really like that med. i also dont like that med b/c i have been on it myself for nausea when i was prego and it made me want to pull my hair out. i am also a nurse and i give my patients this med it seems to cause agitation. he said if grace doesn’t show any progress in a few days he will do a endoscopy. well grace is one month old now and pretty much cries all day long. she sleeps well at night , but the crying is pretty bad. i dont know if it’s from the gerd, if she has colick or if she just wan’ts to be held. well i have a couple questions, i feel like i can get better advice from all you mothers and grandmothers than any doctor out there

what is chocobase and does it apply to already premixed prevacid?

the doctor told me not to use rice cereal to thicken, but i will try anything. has it worked for any of you??

how about the tucker wedge? is it worth it to buy it??

can she have a mspi w/o a rash or diarrhea??

[Anonymous]

Hi! That’s wonderful that you got her on a good dose of ppi, many of us have had to fight for 30 mgs. Since Grace is so uncomfortable she must be burning alot. You can continue to use the zantac with the prevacid but seperated by 2-4 hours so at least she is getting something to cut the acid. We aslo use a ml of mylanta cherry supreme, it always got so bad about an hour after she ate when the acid had time to produce. We used caracream and loved it. I think it is like chocobase, we kept it on hand in case the pharmacy was closed or I went somewhere and needed to compound it myself at home. When you have the prevacid compounded you don’t have to wait 30 mins, but noone ever told me about the 2 week rule…where it can less effective so you need to get another batch mixed up. sounds like you have done your research on it though.

We skipped the rice and went to simply thick to thicken, I still have some I could send you if you want to try it. And the wedge was a life saver for us! She was on her tummy, but was comfortable. We never could lay her flat… it make things get worse!

Does Grace have alot of gas and trouble pooping? That was ryanns issue at first, then came the diarrhea, with mucous and small black peices of blood. It turned into colitis. Would be great if you caught it before it got to that point! Best of luck! Sarah

[Anonymous]

hi sarah, thanks for the info. im still confused as to what chocobase and caracream are and what is the two week rule? grace has pretty smelly gas, and poops only every three days (about) her bm’s are pretty normal in consistency to this point. the thicken stuff they sell at walgreens i think. i know i used it at work with some of my patients. it was called thick-it, and you could thicken it to any consistency like honey ect. thanks for offering to send it though

[Anonymous]

Great news about the 30mg of Prevacid. That drug and dose was the miracle answer for my little guy. I hope Gracie does as well on it as Myles did.

http://www.marci-kids.com has some information about the problems with compounded PPI meds. Apparently if it’s not compouding perfectly it loses it’s effectiveness before the medication is all used up. That’s why it is suggested that you ask for a two week supply.

I don’t think chocobase or caracream can be used with suspensions, but I’m not entirely sure. I know it couldn’t be used with Prevacid solutabs, which is what Myles was on.

As for thickening, it’s rather controversial. Some say it helps, others see no difference. For Myles it seemd to help only in his choking when feeding. It made no difference in how much or how often he spit up and it definitely did nothing for his reflux pain. Thankfully, Prevacid took care of the pain. Does Gracie choke during feeds? Is she throwing up alot? Personally I wouldn’t thicken unless it is absolutely necessary as it often causes additional problems…like gas and consitpation; especially if you are using rice.

Well, good luck and keep us posted!

[Anonymous]

grace does throw up alot now. in the past week she has taken a turn for the worse with her crying. she cry’s all day long. i just sent my husband out to the store to buy mylanta cherry supreme. i gave her 1 ml. hopefully this will work. she does not choke during her feeds only after when she goes into the sandifer mode. i must change my clothes 10 times a day!!! i long for the days when this is all over. i tried to do the rice cereal today and , the whole process was a headache. as for the prevacid i am confused as when to give it??? i believe it has to be given on a empty stomache, but if a baby has reflux they never really have an empty stomache????

[Anonymous]

You should see improvment in about 12 days, when the prevacid really kicks in. We did have a rough time during that time and finally I read about the zantac/prevacid combo here and had my dr. prescribe some for us. Hope the mylanta works…. it will help with the pooping issue too. That “thick it” stuff is really binding, i think it is corn based so you may find yourself in trouble there. She already sounds constipated with all the horrible gas. That has been our main issues all year, all the painful intestional gas. Ryann got so bad on that that we had to use baby suppositories for a few days so i switched to simply thick. Since it is a jelly like consistentcy it just goes throught their systems and also helps with the poos.

The carracream and choccobase are actually compounding agents that you use at home. You take your capsules and emtpy them into the bottles and shake it. It is easier than trying to get the pharmacy to make it correctly and tastes alot better than the no-flavored pharmacy compounded prevacid.

Maybe if all the gas and constipation go away you will find that she is not mspi. Then you could give her that enfimil with the rice already added- so no more messy riced cereal to deal with! That would be alot easier for ya’ll! Hope you all have a easy night and she feels better with the mylanta!

[Anonymous]

my daughter doesn’t have diarrhea or a rash, but everytime I try to eat any dairy in my diet, her sleep cycle shortens during her naps and she ends up waking up more at night…so I do think that your baby can have MSPI and not have any of those symptoms you listed. good luck! 🙂

[Anonymous]

Hi there. I’m glad that you got your daughter on a good dose of prevacid. As others have mentioned, you need to be careful about how it’s compounded. We had my dd on compounded prilosec, and I could never figure out why it wasn’t working for her. Part of the reason was her dose wasn’t adequate, but the other part was that it was being made at 20mg/ml and we were giving 0.5 per dose twice daily.

Hopefully you’ve had time to check out the marci-kids information on how to ask for your PPIs to be compounded, but if not, I’ll put some of the highlights into my reply.

One of the things that I noticed about your post is that your daughter is taking 1.5 ml twice daily. That means that her suspension is probably 10mg/ml. According to marci-kids research, they say that in order for there to be enough buffer per dose, for most of the doses our kiddos are on the medication must be made somewhere between 2-4 mg per ml so that each dose will be at least 3.5ml. If there is less than 3.5ml per dose then there won’t be enough buffer to protect the drug from the acid in the stomach. Also the drug needs to be made with at least 16.8 percent sodium bicarb (for doses less than 7ml). When the dose is higher then 7ml per dose, then it can be made with 8.4 percent. Also, make sure to get it unflavoured, which doesn’t only mean NO flavouring, but also according to Dr. Phillips, no sweetening agents such as sweet syrup or simple syrup, or stevia powder.

In the end, our compounding pharmacy disagreed with the above information. This research has been done by marci-kids, and no one else has done research of this kind. Unfortunately, these findings have not been properly disseminated and few pharmacists believe the above info. So beware that you may have a fight on your hands to get it compounded properly.

Because it took so long to get my daughter’s meds sorted out, she developed a terrible feeding aversion that we are still trying to deal with every day. I am currently in the process of deciding whether or not to file a complaint with compounding pharmacy that we were dealing with.

Best of luck to you. I hope that you get things sorted out soon.

[hellbennt]

it’s a lot to sort/skim through, but most (if not all) of your questions are addressed here: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;PN=1&TPN=1

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