Posted By Posting
Mar 25, 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
Hi all,

We got Jazz's scope results yesterday. She has EC in her lg. and sm. intestine :-(...... Anyways, we probably will start her on very low dose of prednisone (steroids). Hopefully that will help.

We are back on Nexium too for her AR which has come back. She also continues to have low IgG and IgA and IgM. Her dr.s think she has primary immune dif. b/c her Ig's have always been low ( so are her Neutrophils).

So, she has to go for bone density tests, more b/w and then immunologist consult. If they agree with prim. Immuno. def. then we go for transfusions before we start prednisone. Also, she will be retested for milk and gluten intolerances to see what exactly her triggers are.

I'm so sick of all this!!! I hope they finally know what's going on!!!! Thanks all!!

Mar 25, 2010
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
Oh poo, I'm so sorry to hear she still has EC....I was really hoping it was in remission :(. But ya know what Brenda, you and Jazzy have been through the wringer for close to 3 years...it's sad it takes so long to start figuring things out, but at least they are starting to look at her issues more indepth. Hopefully you are heading in the right direction. I pray she is not immune deficient. Good luck with everything (hugs)
Mar 25, 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.
Thanks, I am happy that they are putting the pieces of the puzzle together. Hopefully after the prednisone and the IgG therapy she'll start to feel normal. Thanks for your support Michelle. P.S- how 's the nausea?
Mar 26, 2010
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Ugh...I wish there'd been better news, but I hope things at least get on track so that both of you can get a little relief from the long roller coaster ride you've been on...
Check with your
doctor first!