Posted By Posting
Nov 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.
Refluxing again
So Jazzy is now refluxing again, akmost all the time. It's silent reflux so it was hard to tell, but she started grinding her teeth, which I thought was maybe a teething thing, but I've noticed that the grinding goes with the reflux....like when she was a baby and chewed her fingers....

I have no idea why she's started again, she hasn't even put on a pound, but we're back to maalox 3-4 a day.

Her GI wants another pH probe, but I am holding off because I KNOW she IS refluxing and unwilling to put her through that again for the 4th time (esp. since the first 3 were positive, you'd think they would take my word for it this time...) Am I nuts to think this?

Nov 24, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
Ok, that is weird. Ella grinds her teeth too. I never made the connection between that and the gerd. I will have to pay more attention to see if hers tends to go together.

I am sorry that she isn't feeling well. Have you asked them to trial run on a medicine change to see if it makes her feel better? Some doctors will do that and some won't. I do understand why you wouldn't want her to have to have yet another test. I am not looking forward to Ella's either. :(
Nov 24, 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
I would say no you are not crazy. Because if you are crazy then so am I. Adriane is doing the same thing. With the grinding of the teeth and her hands are constantly in her mouth and she is drooling like crazy, usually followed by what I hear her refluxing.

Our GI wanted to do another PH probe and I told him not now. We don't need to submit her to that just to findout the same results. I hope the maalox helps! -Amanda

Nov 24, 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 !!!
No, you aren't nuts. You are a samrt mama with good instincts and critical thought. You are the one witnessing the silent reflux, not the GI. I'm so sorry that she has been in so much pain lately. Everybody tells me to savor the days while my child is still a baby..If only they knew what it is like to have a silent refluxer who isn't able to express themselves verbally yet! It is very tricky.. Sending you lots of love !!!
Nov 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.
Jen: Sorry Ella isn't doing so hot. I will try for the med trial. When's her test?

mom2: Is anything really helping her with her reflux? Are you giving breakthrus?

Thanks Seamus' mom, silent Ref. is so hard to detect. How is Seamus doing?

I think we've been thru so many meds for reflux already that her GI might be considering surgery :-(

Nov 24, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
Ella's having an upper GI December 16th (to check for hernia and of course r/o other abnormalities) and a EGD w/ biopsy the next day. It's beyond time though... she has been on reflux meds for 3.5 years.
Nov 24, 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.
oh weird emi grinds her teeth too, sometimes not all the time but yeah it's usually when she has reflux flare now that i think about it. what a smart lady you are!
Nov 24, 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
Cooper does the teeth thing too. I thought it was teething, but who knows. I wouldn't want to do the probe either. If she is anything like Cooper, the reflux she is having now will be worse than what she'll have during the probe. You know when she's doing it. Cooper is refluxing all the time now and I wonder if the probe will show much b/c he was so out of it and it was nothing like it is now. It is so frustrating!
Nov 25, 2008
bib3mama
I have 3 boys, youngest has gerd, 18 months of no sleep. Prevacid 2x/7.5 mg thinking of switching to prilosec.
David also grinds his teeth. I thought it was teething and have been giving him motrin. But now I see that it must be a GERD thing.
Check with your
doctor first!