Posted By Posting
Dec 01, 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.
Jasmine
I don't know what's going in here, but Jazz has been refluxing again, but worse, she's been been having horrible diarrhea with mucus, sometimes without. She can't sleep and hiccups all day. She wants to eat but ends up having explosive diarrhea. She is almost eating nothing at this point, so I'm trying to get the neocate into her milk as fast as possible. We are up to 3/4 scoop per 7 oz.

I just don't what to do at this point.....A pH seems pointless..she is refluxing. I didn't start any probiotics because everything I have found contains milk. I just don't know if it's a diet thing or just her Eos. disorder not being controlled.

She is refusing to lie down, I often have to resort to maalox just to get her to lie down to sleep. We are miserable.... I am going to have to call her Dr again, and I don't usually get results for a week or so, but what can I do at this point?

Dec 01, 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!
This is from Prothera's Klaire lab line for probiotics - they're wonderful

"ProThera products are free of artificial flavors, preservatives, and colorings. Naturally-derived, inert excipient materials, including cellulose-based excipients, vegetable-derived magnesium stearate, L-leucine, and silicon dioxide are used in very small amounts as tableting and encapsulation aids. Tableted products are protected with an inert, water-soluble cellulose coating that dissolves readily upon ingestion, thus facilitating tablet disintegration time. Vegetarian Vcaps™ capsules made of plant cellulose are used exclusively for ProThera's two-piece encapsulated products. Common allergens such as wheat, corn, soy, yeast, and dairy are avoided."

Dec 01, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
Sounds like we are in the same boat right now. I'm sorry that you are dealing with this too. I don't have any thing to offer as I am feeling desperate and out of ideas myself. Just wanted to offer empathy! -Amanda
Dec 01, 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.
thanks ladies...I'll try those probiotics, thanks slimfast.
Dec 01, 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
Well the mucus diarrhea must be catching around here, because Cooper has it too. And his reflux is awful. And I feel like it has been worse since the ph and the egd were done. I totally understand what your going through. Wish I had some advice b/c I could use it too. LOL. I hope the probiotics help. I am really sorry! Hugs!
Check with your
doctor first!