Posted By Posting
Aug 22, 2008
carmarhal
Adoptive mommy to Micah (Feb 2006), Caleb (Mar 2007; 26 wk preemie, subglottic stenosis, BPD, GERD, dysphagia, FTT, in PT, OT, ST, feeding therapy, 30 mg Prevacid daily, mostly pureed foods, shakes & Pediasure) and Ethan (Feb 2008; 28 wk preemie, BPD, GERD, 15 mg Prevacid daily, Similac Sensitive/Alimentum)
Update and Thanks
First, I want to say thanks so much to everyone who has responded to my posts. I have learned so much in just a couple of weeks of joining this forum that I might never have known otherwise, and have already been able to get much-needed help for my boys because of your advice!

Ethan's doctor said we could try Alimentum (wow! $$$), and he does like it much better than the Nutramigen (of course!). If I hadn't learned about it here I wouldn't have known to ask, and the doc sure wasn't offering the information!

Caleb saw the GI doc on Wednesday, and he is scheduled to have a gastric emptying study done on Tuesday and an upper GI on the 8th. I'm looking forward to hopefully finding out what has been making him throw up. The doc said we might need to put him back on Reglan, which he was on up until about 3 weeks before he came to us (he was 12 months when we got him, 9 months adjusted).

I feel much better since that appointment, because the doc said that Caleb looks healthy and proportionate, and he loved my feeding log (thanks again for the idea!) and said I was feeding him a very nutritious and well-rounded diet. I've been feeling so stressed out about him not eating as much as the feeding clinic said he should, and the doc said he's getting plenty of calories for his weight. Also, the feeding clinic wants him to get at least 28 oz. of fluids per day. If you don't already know it, that's just about impossible with his feeding problems! The doctor said that what he needs is fiber, not more fluids. He suggested Fiber One yogurt and some different fruits, and already we've seen an improvement!

I'll be posting our UGI and GE results when we get them. Again, thanks for all the help! I can't tell you (though you probably know) how wonderful it was to find this website and know that I'm not the only one dealing with these issues!
Aug 22, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
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Thank you for posting this! I think about your boys often since I have a preemie too. I meant to ask GI today about fiber one yogurt, so I am happy you posted that...our kiddos are about the same adjusted age so it's ncie to know I can give her that. Your boys are ALL SO CUTE!!!
Aug 22, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
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p.s. I have not updated my siggy since the site was down and gave us all outdated siggys!!
Aug 23, 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.
i am so glad you are getting some answers and your boys are feeling better, it sounds like you have a wonderful GI. and yes your boys are all so handsome they are so lucky to have such a great mom like you :)
Aug 23, 2008
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
Glad to hear that things are improving. It's so funny about the formula - Halley hated Alimentum...she'd scream and bat away the bottle. She loved Nutramigen though! They are both stinky in my book :-)

Good job in the feeding department - you should be very proud of yourself!

Aug 23, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
I'm glad the appt went well and hope the testing goes smooth too. I love you new siggy w/ all 3. How'd you do that!?
Aug 24, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
HI! so good to hear from you. wonderful news that you are getting some appointments scheduled for him to see what is causing his vomiting. coyle too hated nutramigen and has really done great on alimentum. good idea about the fiber one yogurt... keep us updated. they are adorable littel boys!!
Check with your
doctor first!