Posted By Posting
Dec 05, 2010
jgsbennett
Ginger Bennett
Mom to Stanton - 2 year old with GERD, DGE and MPI
ourcarpetstains.blogspot.com
Organic Acid test
We've had lots and lots of testing done this year. Some genetic labs results just returned and show an elevation of dicarboxylic and 3-hydroxydicarboxylic acid in Stanton's urine. Our genetic doctor said this abnormality can be seen in patients iwht fatty acid oxidation defects or organic acid defects. All other genetic testing has returned normal. I just thought I'd throw this out and see if any of you have had this test or heard of these results. Because of the elevated levels, we have to go back for more labwork. Thanks for any insight here!
Dec 07, 2010
noor117
Strong, Beautiful, daughter who is thriving beyond imagination and a healthy, happy 3 year old.
Meg also had the dicarboxylic aciduria. She has also been diagnosed with probable mito. After the diagnosis for both us, we were put on Levocarnitine and it has made a world of difference.
Dec 07, 2010
jgsbennett
Ginger Bennett
Mom to Stanton - 2 year old with GERD, DGE and MPI
ourcarpetstains.blogspot.com
So glad to hear that Meg has responded well to Levocarnitine. I'm not sure where this will take us....but I'm so hopeful it at least brings us one step closer to an answer and a plan of action.
Dec 08, 2010
beth anderson
PAGER Director and original GERD Nerd
Mother of Chris (1988) and Katie (1990)
Author of The Reflux Book
Member of PAGER since 1992
Donor since 1992
Ginger's blog
I've been reading your blog. It is very touching and well written. I just realized I still have the music playing an hour later. You brightened my day.
Dec 08, 2010
jgsbennett
Ginger Bennett
Mom to Stanton - 2 year old with GERD, DGE and MPI
ourcarpetstains.blogspot.com
blog
Wow Beth! Thank you so much for your sweet words. The blog has been GREAT for me. I started it to keep my friends and family up to date on Stanton....but now find it healing to sit, process, and write. The music is my favorite part too :)
Dec 28, 2010
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 also had dicarboxylic aciduria. She was later diagnosed with a Primary immune dificiency disease. Just wanted to throw that out there!
Check with your
doctor first!