Posted By Posting
May 25, 2011
lukasmom
Questions to ask specialist
Questions to ask specialist Infant son 7 weeks old, born 4/1/11 Was diagnosed by pedi with MSPI and silent reflux at 3 weeks of age but symptoms are not getting better.  We tried Alliumemtum formula with previcid solutabs 15mg half in the am half in the pm. We have been on the meds for 21 days with Alliumemtum for 14 days and now we are using Neocate formula for a week now with no changes to fussiness, sleeping is still not very much and he is eating every 2 hrs or less (or if he does not eat he is very unconsolabe, pain cries).  We are going to a pedi gastrointestinal doctor and just want to know for sure this is what he has.  He chokes almost every time he eats, he gulps down his milk like he is so very thirsty, he kicks his legs and archs his back quite frequently after feeding, although less with the Neocate formula.  He has the hiccups after every feeding, has wet burps and will occasionally spit up, but with Neocate that has been less as he was largely spitting up with Allimuntum right before we switched to Neocate.  He sounds congested all the time.  We get hardly any naps during the day out of him and lucky to get 4 hours of sound sleep at night.  He will sleep then again and wake up crying then pass gas and then fall right back to sleep.  He has the most gas of any infant I have ever known and has not gotten any better with the Neocate.   I guess what questions should I ask to make sure we are getting the best care and that we have the right diagnose for our son.  Yes this is our first child and I could be reading into things but that is why I want to be sure I ask the right things and give them the correct information.  Thanks for your help! Angie Jaeger 
May 25, 2011
lukasmom
Sorry
Sorrymy posting got duplicated! First timer on this site!
May 25, 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
DCD
Hopefully DCD will chime in on this one. She knows a ton about formulas. Some kids are so senstitive that they need the Ready Feed formulas. Her daughter was that way. Your son might be in that camp.

Solutabs have lactose in them and are not suitable for babies with MSPI. Please have your doctor change you to Zegrid (1st choice) or suspension Prevacid/Priolec. Make sure you get it made at a compounding pharmacy.

When you give the PPI make sure it is on an empty stomach with the feed 30 minutes later. This is critical unless your PPI is made with Caracream/chocobase or is Zegrid.

May 25, 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.. Check out the site www.marci-kids.com. Read EVERYTHING on there. Knowledge is power.
May 26, 2011
beth anderson
PAGER Director and original GERD Nerd
Mother of Chris (1988) and Katie (1990)
Author of The Reflux Book
Member of PAGER since 1992
Donor since 1992
MSPI
Alimentum has broken proteins and some kids still react to them. Neocate and the other amino-acid based formulas have no proteins and reactions are pretty rare.

Yes, solutabs have a bit of milk sugar in them. Plenty of babies react even though this isn't yet documented in the medical literature. Watch for sugars and hidden ingredients in other medicines as well.

Prevacid tabs can't be split. Your doc can call the company and they will tell him why. They are not mixed uniformly on purpose because the FDA wanted them to be un-dividable. It is theoretically possible to dissolve them, stir well and use only half. But breaking isn't recommended.

For gas, try the smell test - is the gas just air that he is gulping or methane (stinky!) that is being created in his digestive system? The GI and a nutritionist can help with stinky gas, a speech therapist can see why he is swallowing air. Gas gulping might go away if his pain level diminishes and he starts to eat less ravenously. Reflux feels a lot like hunger and some babies act like they are starving.

It takes about a week to see partial results and 2-3 weeks to see great results when you try something new. It might be a bit soon to see results from Neocate - particularly if he is reacting to the Prevacid.

Marci-kids recommends high doses of PPI's. Some kids may need them but not all kids. Your doctor might want to review the evidence for high doses but most docs will try regular doses of several brands before moving to a high dose of any brand. Zegerid does absorb differently. Marci kids has info on why.
Check with your
doctor first!