Posted By Posting
Jan 26, 2009
serenitysmom07
Serenity has severe GERD, failure to thrive, nissen and g-tube, developmentally delayed, aspiration pneumonia, cronic lung diease since birth. Currently she takes lansoprazole, reglan, bethanochol, diruril, spironolatone, albuterol, atrovent, advair 115/21, and flovent 110, she is also on 1liter of oxygen 24/7.
any ideas???
serenity is still gagging and coughing and night, right now she is on continuous feeds for 18hrs a day her rate is only 50ml/hr so she is getting 900ml. i told her doctors so they order a milk scan where they put barium in her g-tube and the see how far her reflux goes. they told me that she is only refluxing mid way. whatever that means, so she cant be aspirating. i was relieved when i heard that, yet they still didn't give me a reason for her constant coughing and gagging. mind you she has a nissen and is currently maxed out on all reflux meds possible. what do i do to help my baby??? what questions should i be asking???
Jan 26, 2009
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.
does she have any intestinal motility problems? allergies? is the nissian still tight? is it acid reflux she is gagging on or is it non acid? does she need to see an ear nose and throat dr(ENT)? will any feeding therapy, occupational therapy programs benefit her?those are just a few questions i can think of. hope this helps!
Jan 26, 2009
serenitysmom07
Serenity has severe GERD, failure to thrive, nissen and g-tube, developmentally delayed, aspiration pneumonia, cronic lung diease since birth. Currently she takes lansoprazole, reglan, bethanochol, diruril, spironolatone, albuterol, atrovent, advair 115/21, and flovent 110, she is also on 1liter of oxygen 24/7.
yea she has motility problems, no allergies, her nissen is still tight, im not sure if its acid reflux or her saliva??? she passed her saliva gram in august.... yes she sees ENT because she snorts and snores and she some time forgets to breathe... she has an OT that comes twice a week.... any other ideas... we have been fighting this battle since the day she was born....
Jan 26, 2009
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.
has she had a ph probe done since she had her nissan? i ask b/c the acid part of her reflux might be controlled with meds and she may be refluxing NONacidic stuff, but the ph probe will tell you for sure.

there are a few here that might suggest you looking into a impedance probe which might be better for your dd's case. i'm not too sure if i can give you any good information on this test but it would be something to ask the dr about.

from my experience in my daughter emily's case (she does not have a nissan or G-tube) she was chocking on reflux but since it was not acidic and she was not aspirating they told us we could try a drug like reglan or eurtromiycin. she had a bad reaction to reglan and was not a candidate for ees, so we just kinda have to deal with it and hope she grows out of it. could you ask about them about motility meds?
Jan 27, 2009
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'm sorry i just read in your profile she already takes reglan! never mind on that then lol have you ever heard of

parent-2-parent.com ? there are forums on there for kids with advanced issues such as your dd's. i think there is even 1 or 2 kiddos that have chronic lung disease as well. i hope this is a bit more help. :)
Check with your
doctor first!