Posted By Posting
Mar 10, 2009
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.
Jazzy update
Hi all,

I haven't posted much but I am trying to keep up. Life has been sooooo hectic with a newborn again...sigh...At least Nathan has been healthy so far.

As for my Jazzy, we are seeing Endocrinology/metabolics in 3 weeks to see if she has some sort of Protien enzyme def. or some metabolic disorder. I hope we can get answers. We've noticed that her face swells up from time to time and she retains fluid, she is constantly tired and complaing of some sort of pain and we also noticed a bit of hyperpigmentation around her neck and groin. So I am hoping that we will find something treatable, but at least something that will help her tolerate proteins or amino acids.... For the moment she is not getting any protein/amino acids and she is coming around again to her old self, slowly. Anyways, will write more before then.

Brenda

Mar 11, 2009
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
I hope you can find some more answers on Jazzy soon. I know how frustrating it is. I'm glad to hear the baby is doing well. Ellen
Mar 11, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
Prayers that this visit will give you some answers. Glad she is feeling better without the protein/amino acids but still, you need to know what is going on.

Good luck.

Mar 11, 2009
mommy2max&lucy
Patti, mom to Max (3/04) with EE and chronic sinus issues; Lucy (6/07) with reflux
Hope you find the answers you need! So happy to hear that Nathan is healthy!
Check with your
doctor first!