Posted By Posting
Mar 19, 2009
dmayjo2
Cadence diagnosed with reflux at 6 weeks, was taking Zantac, then Prevacid, then back to Zantac and now Carafate, also on probiotics, Sandifers syndrome, silent refluxer, never sleeps, flat head syndrome from being elevated all the time.
Carafate???
Hello, I am new to this site and I find it very helpful and informative. My son just turned 3 months old the other day and he was diagnosed with GERD when he was 6 weeks old, first he was put on Zantac and it work wonders but only for 2 weeks, then after that he was put on Prevacid and it did not work at all for him and that is also I noticed his "strange seizure like movements" he was then diagnosed with Sandifers also, the doctor then decided to put him back on Zantac and same deal as before, it worked great for 2 weeks and now he is refusing his bottles and crying all the time, so today I talked with my pediatrician and we are going to give Carafate a try. I was wondering what other parents think of Carafate and have any had success wth the drug? Will the Zantac have to be stopped before taking Carafate? Any side-effects? I really appreciate any info and advice I can get.
Mar 19, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
The Zantac will not have to be stopped, but you may have to change the timing. I find it strange that your doc would take him off the prevacid and back on the Zantac. Were you given a reason? Zantac is VERY weight sensitive so the dose needs to be adjusted often.

I give Isobel carafate on an as needed basis. It works wonders for her - it's like super mylanta! Instantly eases the burn.

One other thing you might look into is food allergies. I know it seems bizarre for one so young but it seems like a lot of kids here are allergic or intolerant. Isobel is allergic to milk protein, eggs and very sensitive to corn never mind the environmental stuff!

Welcome and good luck!

Mar 19, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
Oh, and prevacid can take anywhere from a week to 6 weeks to start working.
Mar 19, 2009
dmayjo2
Cadence diagnosed with reflux at 6 weeks, was taking Zantac, then Prevacid, then back to Zantac and now Carafate, also on probiotics, Sandifers syndrome, silent refluxer, never sleeps, flat head syndrome from being elevated all the time.
Thanks for replying! The doctor took him off the Prevacid because he was showing no signs of improvement, he was actually getting worse, she put him back on the Zantac because it was helping him somewhat, he also did not show his Sandifers when he was on the Zantac. As far as the allergies, we changed his formula to Similac Alimentum because the doctors believed he is sensitive to milk and soy proteins, he has been on the Alimentum since 6 weeks and it did make a huge difference. Thank you and I really hope Carafate works well for him also!!!
Mar 19, 2009
rissaroo
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
Prevacid took 3 full weeks to even start working for my son and six weeks to see the full effects...he got worse the first 2 weeks and the very gradually started getting better. I don't have experience with the other meds, sorry! I hear you with the never sleeps comment, my kids are older now but I had 2 that never slept. No fun. Just wanted to say welcome and also to say that your little guy is so cute! What a doll. Those eyes are amazing. I hope he's feeling better soon!
Mar 19, 2009
dmayjo2
Cadence diagnosed with reflux at 6 weeks, was taking Zantac, then Prevacid, then back to Zantac and now Carafate, also on probiotics, Sandifers syndrome, silent refluxer, never sleeps, flat head syndrome from being elevated all the time.
My doctor should have known that about Prevacid, she took him off of it after only 2 weeks of being on it, that is probably why it did not work for him. I guess I can handle the sleep issues as long as he is not screaming from the pain! Thanks for welcoming me, I am sure I will be on here all the time.
Mar 19, 2009
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
Welcome to PAGER. :)

If this new plan doesn't work you might want to ask if trying prevacid again is worth a shot. Maybe you could stay on a small dose of Zantac while they wait for the prevacid to kick in? Just a thought.

I also wanted to reiterate that the Zantac is very weight sensitive. Our youngest used it for a while and we were constantly readjusting the dose so if you hit a growth spurt and then find the reflux symptoms are back with a vengeance you may want to talk with the pedi.

Do they think you should see a pedi GI? Just wondering since he is dealing with the sandifers syndrome.
Mar 19, 2009
dmayjo2
Cadence diagnosed with reflux at 6 weeks, was taking Zantac, then Prevacid, then back to Zantac and now Carafate, also on probiotics, Sandifers syndrome, silent refluxer, never sleeps, flat head syndrome from being elevated all the time.
Cadence weighs about 12 pounds and he is on 1ml 3x a day, but this is the same dose she started him on at 6 weeks, so I am not sure if he should be taking more or not. Our pedi also told me today that if we don't see improvement in a couple of weeks, we will then go to see the pedi GI. I want to of course see improvement but I think I would feel good about talking to the GI.
Mar 19, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
A ped GI is the way to go, they just deal with these kids and meds more often than a regular ped. Personally I'd ask for a referral since your doc hasn't adjusted Zantac dosage for you. In the meantime, ask for a dosage increase. The carafate is more of a breakthrough control med - the goal would be to lower acid production with H2s or PPIs. Plus, carafate can be a pain to dose due to timing issues. When he was on prevacid did your ped make sure to tell you to dose on an empty stomach? At least a half hour before food or it doesn't work. Just my opinions and thoughts....HTH
Mar 19, 2009
dmayjo2
Cadence diagnosed with reflux at 6 weeks, was taking Zantac, then Prevacid, then back to Zantac and now Carafate, also on probiotics, Sandifers syndrome, silent refluxer, never sleeps, flat head syndrome from being elevated all the time.
No we were not told to do it on an empty stomach, and he was only on 7.5 mg a day, so I had to break the solutabs in half and I was told to save the other half, but I did read that you cannot save the other half past 15 minutes?
Mar 19, 2009
mommato3
I always saved the other half when my son was on that small dose (too expensive not too. Empty stomach is a MUST and wait 20-30 min. after giving it before feeding is also a must for it to work. IF given the right dose and given the proper way, Prevacid has done wonders for MANY reflux babies. I agree with the Ped GI. They are much more comfortable with giving higher doses of PPI, etc. and will be able to run more tests if the need ever arises. It is very hard sometimes to get into a good GI so don't wait until you are desperate before trying to get into one. Go ahead and get your referral now. For example-My 4 month old (14 pound) baby just got put on by a GI doc 30mg of Prevacid which is a Big dose. Very few babies need that big of a dose this young but his is severe and nothing was working. My pediatrician was horrified the GI put him on that but let me tell you it has taken 2 weeks of the doubled 15mg dose that he was on before we noticed any changes and my baby has taken his bottles the past two days and has gained some weight for the first time in a month. He also put us on Elecare. We are going to have more testing done but it takes a long time to get in for that stuff. GI specialists are wonderful if you can find a good one.
Mar 19, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
I think most of us save the half solutab for at least 12 hours or so. That's what I do. I think the 15 minute deal is for solutabs that have been disolved in water. The 30 minutes before food is essential and it also has to be 2 hours after feeding. Otherwise the prevacid really won't work. Just another reason to see a ped GI, JMHO.
Mar 19, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Just FYI I think that Zantac dose is too low. If you think it needs to be bumped give the Dr a call with the current weight and they can adjust it over the phone.

I will second doing both meds for a bit to give things time to heal up. If there is damage inside you are gonna want a PPI (Prevacaid) to heal things. The zantac can't really do that.

And not to beat a dead horse LOL but Zantac is extremely weight sensitive.

Just make sure you don't give the Carafate and the GERD meds at the same time. They will cancel each other out. We always gave Jedd his Carafate 30 mins prior to each meal. We had spotty results with it but that was because Jedd was completely NON oral and 100% tube fed at the time. So getting him to take enough of it orally was really really hard, and putting it in the tube was not really that effective.

Mar 19, 2009
mallory'smom
Shawna: First time Mom to Mallory (10/07/08). Silent reflux diagnosed at 2 months. Alimentum formula fed. Trial of Losec (minimal effect). Now Prevacid 1x/day plus Zantac 2x/day.
I feel for you... Mallory had much of the same problems with meds and also exhibited the Sandifer's signs. We had a very long few months of trial and error with meds and finally found that giving BOTH prevacid and zantac works for her. We initially tried Losec (Prilosec in the U.S.) which didn't work at all. Then prevacid -supposed to be the wonder drug for reflux (I take it too) but I was devastated when that didn't work as well as I'd heard. We had some improvement but not enough. So then we added zantac and baby finally started to get some real relief. We also recently discovered that she has delayed gastric emptying which is why I now think that the prevacid doesn't work for her as well as it could due to her stomach never really being empty. And as several of the other moms have already said, zantac is REALLY weight sensitive. We learned that the hard way. Mallory is also on the Alimentum and I do believe it has helped. By the way, not to be negative but YOU have to be your child's biggest advocate when dealing with AR because many pediatricians just aren't well enough educated. If you keep reading the posts on this forum you will find that many of us have put too much trust in the doctors and had to figure out what works for our kids the hard way (without much medical support). This is the best place for advice and you will find a great deal of support. Welcome.
Mar 20, 2009
dmayjo2
Cadence diagnosed with reflux at 6 weeks, was taking Zantac, then Prevacid, then back to Zantac and now Carafate, also on probiotics, Sandifers syndrome, silent refluxer, never sleeps, flat head syndrome from being elevated all the time.
Wow- you guys are great, thanks for the help and support!!! This reflux thing is very frustrating and confusing, I am going to take everyones advice and ask for a referral to a GI, my pedi can't tell me no, right? So now I have a drawer-ful of Zantac, Prevacid solutabs, Carafate, Mylanta, Probiotics, Gripe water, Colic tablets and Mylanta!! Sounds like many parents of GERD children are going through or have gone through the roller coaster ride of trial and error, emotionally and physically!! I am going to give me pedi a call about the GI and we will go from there, thanks again everyone and I will post updates!!
Mar 20, 2009
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
We had wonderful success with our pedi GI. My daughter's reflux was very hard to control and the GI went ahead and changed some med doses, added a med and we are seeing such good results I am wishing we had done it sooner. I hope you have a good experience too and that your little man will be feeling better quickly!
Check with your
doctor first!