Severe Reflux - What do you do when nothing works?

j11skate

I'm hoping somebody will have some experience here.  We've been battling reflux for quite some time.  Zantac didn't work at all.  Prevacid worked for about a month and a half then quit.  We upped the dosage which didn't help.  Then we went to three times a day at the higher dosage.  Again, didn't help.  Then we switched to Pepcid. It helped for almost a week then quit.  Friday we upped the Pepcid to 3 times a day.  It is definitely NOT working.  I'm going to call the Pedi tomorrow.  The screaming in pain is out of control and it breaks my heart.  DD is in so much pain. The pedi said there's still other things we can try but I feel like we've tried so much. Is there any hope?     

firsttogo

What I can tell you is that it WILL end, and no matter what med you try/find, time and growth is going to end it. I am so sorry your DD and You are going through this. This is so hard for you and for her.

Starting solids will help as will her sitting up more, and gaining more control of her core muscles. 

Mrs.Kiltlifter

DD has sever acid reflux. She actually spits up straight acid and her face has acid burns on it. Breaks my heart. I started doing research and found infantreflux.org. At the time we had tried Zantac, didn't do sheat. We had started Prevacid which worked for about 2 weeks and then stopped. The Prevacid we got from a compound pharmacy and I learned it lost its potency after about 10 days. No wonder it stopped working. Now i actualy make our own liquid Prevacid by using MARCI-kids Carabase formula. I buy the OTC Prevacid and use the base to mix. DD has never sounded better. Also they have kits for Prilosec, Zegreid, etc.

Besides Prevacid we do Mylanta for those really tough times. It has to be aluminum free and it cannot be given less than 2 hours before or after a medication dose. and then DD is never laid down. She sleeps in a Tucker Sling/Wedge.

RoxBride

Have you tried adding rice starch or cereal to the milk?

j11skate

RoxBride:

Have you tried adding rice starch or cereal to the milk?

We are just starting that.  I'm hoping it helps some. 

j11skate

firsttogo:

What I can tell you is that it WILL end, and no matter what med you try/find, time and growth is going to end it. I am so sorry your DD and You are going through this. This is so hard for you and for her.

Starting solids will help as will her sitting up more, and gaining more control of her core muscles. 

Thanks for your support.   The pedi keeps reassuring me that it will pass eventually. I just hate how painful it is for dd.  I haven't cried yet (although I'm sure the Prozac is doing its job here) but I've come very close!

j11skate

Mrs.Kiltlifter:

DD has sever acid reflux. She actually spits up straight acid and her face has acid burns on it. Breaks my heart. I started doing research and found infantreflux.org. At the time we had tried Zantac, didn't do sheat. We had started Prevacid which worked for about 2 weeks and then stopped. The Prevacid we got from a compound pharmacy and I learned it lost its potency after about 10 days. No wonder it stopped working. Now i actualy make our own liquid Prevacid by using MARCI-kids Carabase formula. I buy the OTC Prevacid and use the base to mix. DD has never sounded better. Also they have kits for Prilosec, Zegreid, etc.

Besides Prevacid we do Mylanta for those really tough times. It has to be aluminum free and it cannot be given less than 2 hours before or after a medication dose. and then DD is never laid down. She sleeps in a Tucker Sling/Wedge.

When we did the Prevacid the pharmacy said it was good for 28 days.  I wonder why yours was different?  It really did work for awhile and then just stopped no matter what dosage we gave her.  Maybe I'll ask the pedi about what you do and see what she says.  Thanks! 

charmcitygirl

Jacob had pretty severe reflux and it was so miserable - for both of us.  After our pedi had run out of options, we started to see a pedi GI.  She had other suggestions for treatment and then we started working with a feeding specialist who could help a bit.

CMM05

Are you BFing or FFing? If FFing, what formula are you? What bottles are you using?

I swear by the Alimentum and Dr. Brown's bottles.

Do you have the Fisher Price Rock 'N' Play Sleeper? By far BEST baby products out there right now and it is elevated for reflux babies. Put her in there for sleeping and after every eating. DS2 had horrible reflux as well (we are still on Prevacid....) and he slept in it until he was 7 months.

We also put multi-grain cereal in every bottle starting at 8 weeks.

It is really hard to deal with. I would look at trying Prevacid again in conjunction with all of the other suggestions people have made on here.

 I have heard that if you are BFing, you may need to cut out dairy.......the dairy can cause more mucous and congestion in her which in turn can cause the reflux to act up.

GL!

 

j11skate

Thanks for all your responses.  We are going to see a pediatric gi asap and in the meantime I'm going to try soy formula and if that doesn't work we'll try the Alimentum formula.  Thanks for all your help!