Posted By Posting
Nov 13, 2008
ryleemom
Rylee was diagnosed w/ SR @ 2weeks with poor weight gain. I knew something was wrong the 1st time I tried to nurse her but was told she needed a bottle
My 6 week old with SR *New Here*
My Lil grl was diagnosed with SR/MPI @ 2wk old. I knew the min. they handed her to me to nurse her for the 1st time that something was wrong with the way she was eating. She would nurse for a lil' bit then cry terribly. They told me that she may prefer the bottle. It has been quite a journey since then. Our major issue is poor wt gain & poor appetite. She now weighs 9.15 - 14 ounces more than the day she was born. Meds: Prilosec 2ml 2/day Bethanechol 0.8ml - 4/day Carafate 2ml - 4/day Probiotics 5 drops/day Formula: Nutramigen 3 scoops/5 ounces with 1T rice/ounce Dr Brown's with Y cut nipples I do think that meds have helped but we are still having major feeding issues. Sometimes she hurts when she swallows - gulping & refuses the bottle & sometimes (rarely) when we get 2 ounces down her it takes forever & she is done. She does not want to eat more or more often & this is the advice I continue to get from my pediatrician. We do see a Ped GI doctor & have had an Upper GI. I called him today b/c the feeding issues seem to be getting worse, although for the 1st time we gained 6 oz in 2 wks. I am going to a feeding clinic to work with a team on Monday. Have any of you had exp with this & what should I expect???? I am excited to be part of this group. I would love to hear your advice & support. I need help!!!!!!!!!!!
Nov 13, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
beechnut rice or oatmeal is the best- it is soy free and milk free, you might need to go to neocate/ elecare elemental formula for the MPI. My dd has silent reflux too, she too is on carafate and she is 21 months and on 2ml 4x a day i guess the dosing dosen't change much per weight? but i think carafate has been a god send! I think that's awful they told you that she may prefer bottle over breast.

i am by no means an expert but i found sometimes the concentrated (increased calorie) formula is hard to digest. Plus adding the rice (which is sometimes hard on little immature GI systems) it is probably filling her up. she may not want to eat more, but she may be eating adequate amounts caloric-wise. I would ask the feeding team about that but i probably wouldn't change anything until you see them.

make sure you are timing your meds too. prilosec a half hour before she eats. Although carafate says give an hour before you can give it up to 30 mins before food, but do not give it at the same time as the prilosec. give it one hour before or one hour after. Good luck and welcome!
Nov 13, 2008
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
hi there.... Joslyn has Sr as well and was dx'ed with poor weight gain at 5 months. Joslyn is breastfed (with 2 bm bottles a day). Does different feeding positions help her? Poor baby.... You have nothing but support here... Keep track of everything! So you can talk to your docs about it!

Many hugs!

Jacky

Nov 13, 2008
maiam
maia m - GERD. Nissen Fundoplication w/hiatal hernia repair.
Mom to
Son (10) GERD(aspiration pneumonias, apnea, tracheomalacia), Food allergy, Asthma
Daughter (6) GERD, Heart Murmur, Food Allergy, Asthma, Mold allergy
Are you still nursing? If so, you'd need to eliminate milk products (and possibly more) from your diet too. Milk proteins pass into breastmilk. Have they discussed that she might need a different formula? A fair number of kiddos with milk protein issues fail alimentum/nutramigin and have to go to elementals (EleCare, Neocate).
Nov 13, 2008
camile- twins with reflux
Thomas and Lucas_2
I think many of us have been there. I am sure you will get lots of support here. Those first months were so difficult for my family- lots of crying and pain. I've read in many post that oatmeal cereal might be easier to digest than rice cereal. Just somenting to think about. Wishing you and your family all the best. Camile
Nov 13, 2008
ryleemom
Rylee was diagnosed w/ SR @ 2weeks with poor weight gain. I knew something was wrong the 1st time I tried to nurse her but was told she needed a bottle
Where do you get the elecare/neocate????? i have noy heard of them. I will def. get Beechnut rice/oatmeal. So you feel like the feed team is a good resource??
Nov 13, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
beechnut is avaliable at most grocery stores and walmart, that i know for sure and beechnut.com. and heck if they offered you a feeding team take advantage of it! any resource is a good one and then after you use it judge for yourself whether it is helpful or not. but i bet you they might have some good advice. ask your dr about elecare or neocate or any elemental formulas. she may not need them i would try the different feeding stuff before resorting to them. they are SUPER expensive, but sooo worth it if she needs them
Nov 13, 2008
ryleemom
Rylee was diagnosed w/ SR @ 2weeks with poor weight gain. I knew something was wrong the 1st time I tried to nurse her but was told she needed a bottle
I am currently on Nutramigen. Are Neocate & Elecare more expensive???
Nov 13, 2008
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
Welcome, though sorry you have to be here! I concur with everyone on here. We skipped rice (my dd was very constipated - at 14 months, we're still battling it) and went to oatmeal cereal - used beechnut as well, since there's no soy. Ther is casein in it, though it shouldn't bother the MPI, but just to note.

Elecare and Neocate are expensive, but battle it out with your insurance company if your MD wants you to try them - sometimes they will help to pay for it, since they're medical foods.

By all means, go with the feeding team! That's great that they got to you so quickly - many moms here have to wait so long to be taken seriously.

Another note, and this is just such a pain anyway, but sometimes the PPI's (prilosec, prevacid, and nexium) can cause a decrease in appetite. Have you tried different bottles? Sometimes the right nipple can make a world of difference. Many moms do have great luck with the Doc Brown's, but we had the best luck with Playtex Drop In's with the latex nipple (I had to slice the nipples b/c we were thickening with 3 tps cereal/oz formula, so it was like concrete.) Has her palate been checked? Is she able to latch properly onto the nipple? Just thoughts....And maybe ask your MD if Mylanta or Maalox can be used right before a meal to help keep that poor esophagus coated, even though you're using carafate. HTH

Check with your
doctor first!