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Jan 26, 2011
irishmom
RefluXRebeL
IV infusion for 11 week old
I have a 14 month old and 11 week old. The 14 month old had a mild to moderate case of reflux, the 11 week olkd is a different story he is severe. We have been on Mylanta, Zantac, Prevacid and our last resort we started on Jan 14 was Priolsec and Carafate. We are now looking at getting Zantac infused IV with an over night stay in the hospital. I am a adult ICU nurse so I am REALLY out of my element here and feeling like a failed awful parent. Brendan the 11 month old sounds like he is constantly choking on his slavia, coughing and hiccuping all the time, screams when we pull the bottle out and try to burp him. He spits up all the time even hours after we feed him the only time he lays down is when we change his diaper. He sleeps (if he can sleep) in a bouncy chair in his crib and most of the time it is on my chest at night in the chair. I am exhausted and need some help. We see a GI doc but they tell me the last option that usally works 98% of the time is the IV infusion of Zantac. I am nervous and need some insite on dealing with all of this. I also just recently returned to work full time so that doesn't help the situation either
Jan 26, 2011
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
hhhhhmmmm, not heard of this one before. I know Jedd got I.V. GERD meds after heart surgery but had to go on the oral stuff afterwards when we went home. Just like he was on before.

I think maybe sticking to one med for a little bit, like a PPI, and you may see results. If you hop around too much too fast, you won't give the meds time to see if they will work. KWIM?

The choking would make me nervous. Have they down a swallow study to see if he is swallowing properly? If not, I'd get one done just to be on the safe side.

What kind of formula are you using?

Jan 26, 2011
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
I thought I had heard it all, but I have never heard of this. What is it suppose to do?

I am with Jessica. Pick a PPI and stick with it for several weeks. Give it on an empty stomach and feed 30 minutes later. Also try to figure out if it is a milk or soy protien intollerance that is masking as reflux.

Jan 27, 2011
irishmom
RefluXRebeL
Brendan has been on nutramigen since he was 2 weeks. Research indicates that the compounds ( prevacid and prilosec) after mixing to create liquid are only good for 7-10 days, this is interesting b/c we usually have about 5 good days after starting it. We see a doc and my understanding is this infusion isore about"gut rest" he will get pepcid iv and be pretty much given iv fluids for hydration and minimal oral intake to allow the gut to rest and reset the proton pumps. This method has been used for over 20 yrs for severe reflux. Swallow study was good
Jan 27, 2011
irishmom
RefluXRebeL
I also failed to include my 14 month old had the same issues relax and protein allergy. As soon as we saw the signs on our little one we got him on meds and switched his formula. Talk about breaking the bank! Yes We alway give on empty stomach and wait 30min to feed, that is always a nightmare since he is starving and burning. I called the peds floor where they do this and they say they do it a lot and the kiddos are better and happier when they leave b/c the reflux is controlled. No one has heard of this?
Jan 27, 2011
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
I totally agree with the research that traditionally compounded PPIs dont stay stable long. That is why I started making my own using Caracream/Buffer Babies from Reflux Solutions lab aka MARCI Kids which is the University of Missouri's children and infant reflux research facility. www.refluxsolutions.com. It stopped Ryans reflux problems in 10 days and we never looked back. Not only is it great that it is always fresh but the buffering agent allows you to give it to him with out regard to feedings. So you can give it on a full stomach or an empty stomach.. feed or dont feed. It doesnt matter. I have a ton of posts on the board about this as people have asked me questions about it over the last two years. the latest one is under Prevacid OTC.. How to do.

On the infused Zantac.. Nope.. Never heard of it. The concept make sense... give their stomach a break. But in my mind it makes more sense for an adult since their root issue is the proton pumps. This kids it is usually a floppy LES that at the root of their issue. Is this something they will do once or a month or something? How does it continue to work when they start eating again. Please let us know if you do this and how it works. I would love to learn more about it.

Jan 27, 2011
irishmom
RefluXRebeL
caracream
I need more info on this I tried to go to the marci kids website and it is underconstruction. How do I search for just info on this webstie r/t this cara cream
Jan 27, 2011
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
I am not a GI doc just a mom that used a lot of trial and error and knows a lot of other people who have done the same. I firmly believe that not all PPIs are the same. Every person is different and their body responds differently. What is a wonder drug for one person wont do anything for someone else. Ryan was on 30 MG a day of Prevacid and it was doing nothing for him. I added Caracream to it, essentually turning it in to Zegrid, and he did a complete turn around in 10 days. I was able to drop him down to 15 mg and the talk of the feeding tube ended. My sister battled Reflux for years. She did Nexium, Priolosec and Prevacid. Nothing worked. Zegrid ended her issues in 5 days. My dad on the other hand only found relief with Prilosec. My friend can only find relief with Protonic. From a pure medical/chemistry stand point, they should be the same but they are not.
Jan 27, 2011
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Sorry... I cant figure out why my posts are landing in odd spots. The one above goes to another one. Regarding your question.. .you can get more info about caracream through www.refluxsolutions.com
Jan 27, 2011
irishmom
RefluXRebeL
Bufferbaies is different than Caracream, any reason why I would chose one over the other? I spoke to Dave at the company and he just said that bufferbabies has been around the longest, the CaraCream Max sometimes does not work as well as it does not have as much buffering agent in it and it also has added calcium...I am so confused. At this point he is on Prilosec and I think it is not working although it used to but I think it is inactive as we picked it up from the pharmacy on the 14 of January (see previous post about inactivation after a few days ). Which one do I pick for the Prioloec or Prevacid? Any suggestions. You have a wealth of knowledge, this is an awful condition, you think I would be better at this since this is my second time down this road but Nathaniel was not this bad.
Jan 27, 2011
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
I have used both Buffer Babies and Caracream. Both worked great. Difference is with the Buffer Babies the meds are in one side of the bottle and the caracream is in the other. The syringe pulls them together. You can use prevacid or prilosec with it. With caracream z you just have one bottle... kind of like a bottle of antibiotics. You use Zegrid with that one. I use the Caracream Z now. Cheaper and easy. Totally a personal preference. I dont think you can go wrong either way.

And dont beat yourself up. This might be your second time around but every child is different and you didnt have a 14 month old to take care of too the first time around. BIG difference!!!

Jan 27, 2011
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
PS Jen sent me your email. I will respond to you with my phone number if you want to talk over the phone.
Jan 27, 2011
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
We are one of few that have had success with have Prilosec compounded and it worked fine for Jedd. We had it made at a pharmacy located inside our children's hospital.

Jedd's GI will write the RX for it but will tell you to ONLY fill it at that specific pharmacy. They do the best job.

Even only allowing the gut to rest for 24 hours may not do that much. I have kept up with lots of info about GERD and this is the first time I have ever heard of this being done.

IDK and it may be by JMHO but long term, I don't think this is the best solution. Again, I'm not a DR just a Mom and it's my 2 cents.

I have heard of gut rest but not just for 24 hours in order to run I.V. meds.

Check with your
doctor first!