Posted By Posting
Sep 23, 2008
seamus mama
Seamus was diagnosed with Silent Reflux at 3 weeks. Now he is 14 months, on Prilosec and avoiding dairy,soy,egg. Still nursing. A lot !!!
Seamus back on meds- questions.
Hi all. We've been MIA because I am sleep deprived. 5 days after cutting out his PPI entirely, the ole silent reflux started kicking in again. It is so hard to detect..He smacks his lips and makes weird mouth noises while flopping around in bed..Then he arches his back and screams until I pick him up and nurse him. The moment I nurse him he stops screaming and arching which makes me think that he is not in agony but there must be discomfort..I started giving him meds again. How long do you think it will take until he's back on the right track? He is way happier in the day but nights are so tough.I cant get through to the GI right now.I don't know whether to put him back on just one dose of PPI at night (which we did for 3 weeks before cutting out the meds entirely) or i I should go back to giving him it twice a day..Any ideas?
Sep 23, 2008
jedd'smommy
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
Now this is just what DH and I will be oidng but we are no taking Jedd off his meds until he can verbalize what is going on and how he feels. To us it is a quality of life issue. He deserves to live pain free.

I am by NO means saying you are wrong for trying to wean it's just what we do.

I would go back to the full dose and gets some sleep once it kicks in. HUGS

Sep 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 sorry it has been tough. We tried to drop Cooper's med dose , but had to up it again. I do whatever seems to help the most. If he seemed fine for the 3w on one dose, maybe try that. Hugs!
Sep 24, 2008
katiesmommy
Tracey, mom to Katie. Diagnosed with reflux at 3 weeks and put on Zantac. At 8 months old she was removed from Zantac as it was giving her migraines, currently on Prevacid. Switched to Elecare since she is not gaining weight; trialing solids after being off for a month. Geneticist said reason she isn't gaining weight is she is stubborn. Upcoming appts.: Neurologist for developmental delay and EGD scheduled for September. She is one funny baby!
I would get it back in him and then worry about decreasing it a little. JMO!
Sep 24, 2008
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Poor Seamus, and poor mama! I hope getting back on meds helps with the sleep.

Where are you dancing bluegrass in SF? It isn't Hardly Strictly Bluegrass time again already, is it?

Sep 24, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
What a rough road you guys have been on, poor baby. I would go full dose 2x a day and then cut if you think one a day helped before. JMHO...HUGS
Check with your
doctor first!