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Oct 01, 2010
kenneyhl
My son Levi is 13 weeks old. We figured out he has reflux @ 2 weeks. We have tried 4 different formuls (Currently Neocate) and he is taking Pepcid, Prevacid, Mylanta, Grip Water
3 months in.... still no real sucess
My son Levi was diagnosed with Severe GERD and MSPI at about 3 weeks. I feel like i have tried everything out there for him. He is currently taking Gripe water, Mylicon, Mylanta, Pepcid and Prevacid every day. He had a Barium swallow done and just last week we had a Endoscopy and an Flexible Stigmoidoscopy done. The doctors keep telling me that the meds need time to work, but im just sick of seeing him in pain. Ill admitt that his symptoms have improved somewhat, but he still is a fourmula fountain ( i burp him over the sink) still screams bloody murder and arches his back. I have tried 4 different formulas and im currently on Neocate. Im very gratefull that both my insurance company and wic give me my formula which i understand is very rare. I was looking into surgery for him but the G.I. doctor doenst want to do that becuase he is gaining plenty of weight (at 2 1/2 monhs, he weight 14lbs 6oz) so i feel like if my son didnt gain weight, then more steps would be done. We just added the Prevacid 2 days ago and I already want to stop it. About 5 minutes after he take the prevacid, he screams bloody murder and wont stop for atleast 30-45 minutes. Also im noticing a decrease in the ammount of formula he has been taking for the last 2 days. Normally he eats 4 oz of neocate thickened with rice cereal and then once a day he eats 2 tbsp of rice cereal as a solid. Tonight he didnt finnish his cereal or his bottle. I really hate how people look at him and say, "ohh he doesnt look sick" or "i think hes doing soo much better" Really??? Then you take him for an hour. Im constantly terriffied that he is going to aspirate again. About 3 weeks ago he aspirated his medications and we spend the day in the E.R. not fun. I dont really have a question, i just needed to vent...
Oct 01, 2010
kavyamom
Hugs to you. Vent away...that is what this forum is for. Just wanted to ask you, are on Prevacid solutabs? Kavya reacted really badly to the solutabs and my GI doc at the time kept saying to keep her on it for 2 weeks and she was just screaming every night non stop (worse than when she was on zantac). I didn't know better at that time. The Gi kept telling me that the capsules won't make a difference and I believed him...big mistake. I finally tried the OTC capsules recently and even though it is not helping that much at least she is not reacting badly to it like the solutabs.
Oct 01, 2010
kenneyhl
My son Levi is 13 weeks old. We figured out he has reflux @ 2 weeks. We have tried 4 different formuls (Currently Neocate) and he is taking Pepcid, Prevacid, Mylanta, Grip Water
hes on prevacid 30mgs but its a liquid.....
Oct 01, 2010
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
PPIs such as Prevacid take at least 10 days to start working. It wont stop the pukes but will stop the pain and the screaming. Puking by the bucket loads is OK if they are gaining weight. Pain, screaming and damage to the throat is not. The trick for you will be to not have him puke up the prevacid. Have you thought about compounding your own prevacid liquid by using the caracream from the reflux solutions lab? It is more stable and easier to administer than the compound from the pharmacy. You may find that by switching to that you wont need such a high dose of prevacid.
Oct 02, 2010
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
Compounded prevaciad isn't too effective. You have to find a really good compounding pharmacy to get it done or will will go "bad" in about 2 weeks. I would try the solutabs since you don't really need a liquid. You can dissolve those in a little cereal or just in warm water and give it that way. It will be much more effective.

Someone will correct me if I am remembering wrong, but I think that prevaciad has traces if milk protiens in it? It may just be the compounded one that does. We didn't use that med so I'm not sure, we used Prolosec compounded.

JMHO but I'd only use a compound if you have NO choice in the matter. We had no choice as Jedd was 100% tube fed and we had to have a liquid. We tried to get all the other meds down his tube and all it did was give us a clog....a bad thing for a tube feeder.

Pukers don't do very well when they have a Nissen, Fundo to correct their GERD......think of it this way, they will want to continue puking but the puke had NO way to get out.....so instead of puking, the child wil retch and retch and retch. Sometimes they can retch to the point of loosening the wrap and then you are back to square one will more medical issues thrown in.

Alot of Moms here have GREAT success compounding their own at home on an as needed basis. That is fantastic and what is best to do if you need to use a compound. That way, each batch is made fresh as you need it and is still potent.

Since there is aspirating in his past have you or are you seeing a Pulmo for those issues? Are regular GI can't help you with that, it's out of their realm of expertise.

Oct 02, 2010
jgsbennett
Ginger Bennett
Mom to Stanton - 2 year old with GERD, DGE and MPI
ourcarpetstains.blogspot.com
Just FYI, the prevacid solutabs contain dairy in the coating....My son also is MSPI and we were on the solutabs for about 11 months before we made the connection. We now use Buffer Babies from Marci-Kids and mix that with the Prevacid. It does take a couple of weeks for the Prevacid to kick in....so hang in there just a few more days and you should see a decrease in the screaming.
Oct 03, 2010
kenneyhl
My son Levi is 13 weeks old. We figured out he has reflux @ 2 weeks. We have tried 4 different formuls (Currently Neocate) and he is taking Pepcid, Prevacid, Mylanta, Grip Water
i taked to the pharmacist and i guess they make a compound solution with sodium bicarbinate and the prevacid capsules. She said its good for 30 days then i need to get a new bottle. What is the buffer babies and what does it do? I kinda feel lost about this stuff sometimes
Oct 03, 2010
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
Sounds like they are already using buffer babies to compound his prevacid, which is great. You can ask them what the brand is. If you here, Buffer Babies, Cocobase or Caracream, you are good. They are all the same thing and made by the same people. Just sold under different names.
Check with your
doctor first!