Posted By Posting
Oct 19, 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.
a year ago today we got a dx
How strange that it was only a year ago. it dosen't feel that long, who knows what a year feels like any more though! i was just sitting here realizing it is already October. This day last year was when we got our results form Emily's Endoscopy; Reflux, inflammation and CSID. With that, all hopes that reflux would be outgrown were thrown out the window and we just dealt day by day with the Dx.

ever since that day, it was kind of nice, not expecting her to grow out of reflux at every milestone; that now she kind of had a "reason" for her reflux. but it is still heartbreaking every morning when i giver her that prevacid tablet and she says "mmm!" No kid should have to think a daily medicine is yummy, i guess it's better then me having to hold her down to take it, like with her sucraid.

anyway here's to another fabulous year with all you pager moms and to this site for giving me the tools and the courage to get help for my daughter. I am indebted to you all in ways i know you all understand. Thank you so so much.
Oct 19, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
holy cow Kat....you mean it's been a year since her CSID dx?? NO WAY!! Where did the time go. Poor little bunny, though, that she's still having the diahrrea and discomfort. Is she still giving you a hard time? I am so right there with you. Rory's behaviour is so out of whack lately. I have been wondering if it is a pain response, as you suspect with Emi.

It is sort of sad that she loves her medicine, but you are right, it is way better than forcing her. We literally had to take Rory off of her solutabs because we just couldn't get her to take the darn things anymore. Just one day she decided she didn't want them. We tried EVERYTHING.

Does the sucraid work for her at all? I'm starting to forget some of the particulars of her diagnosis. Does it apply to ALL sugars.....cause food is essentially sugar isn't it? Man, I don't know how you do it......how is baby Audrey doing??

Happy Sad Anniversary anyway. Pat yourself on the back for making it through this difficult year with both of your precious girls. HUGS.

Oct 19, 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!
Katie too takes her Prevacid like it was candy but doesn't take candy that well! LOL! She opens her mouth wide when we say medicine, it's so sad that she takes it so willingly!
Oct 19, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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I have to say the same for you, Kat. If it weren't for you, the suffering that Quinn was enduring would have been going on much, much longer. Because of you, we found our diagnosis. THANK YOU!!! I am truly indebted to you!!! It has been a FABULOUS year knowing you! -Sarah
Oct 20, 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.
hi michelle :) yeah it's been a year! crazy huh? since we upped her prevacid her tantrums have gotten better, we still have behavior issues like hitting and screaming- but really nothing like it was. I think the sucraid does work when she takes it, i have noticed better days, but i never can get her to take it at every meal so i don't know for sure. She can not have Sucrose which is "table" sugar (molasses, syrup, brown sugar, ect) her GI is suspecting she might be mildly fructose intolerant too; Another sugar in a lot of things. Audrey is doing great she is a happy smile baby all the time except when she can't poop lol Hows your job going and rory's daycare??? her picture is adorable!

tracey: lol about the candy- emi isn't much into sweets either. i bought her a box of sugar free cookies; i ate them all cause she didn't like em lol

You know sarah, when i first came to this site, reading about you and Q really helped me out your courage and your strength and the beautiful little girl Q is, and i always wished one day i would be able to help her out... i never imagined it would be so much! What a insane coincidence that to little girls on opposite coasts who's moms meet over reflux, have the SAME affliction? It is awful our girls have this- but i am glad i have you, b/c all the other CSID moms SUCK LOL. I think now we can call it even ;) and *cheers!* here's to another year! :)
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