Posted By Posting
Nov 10, 2008
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.
I don't know..
Hi ladies,

It's been a really crap week for us, so I've been MIA for a while. Jazzy is still refluxing pretty bad, and I only just received a call from our GI nurse, even though I called last MONDAY!!! They want her back on her motilium, which we had taken her off of because of her diarrhea. And we have to re-do her CSIDS stool sample because it wasn't liquidy enough. We both had colds last week to top it all off.

If she is still refluxing after I restart her motilium, then they want to repeat a pH probe, which I refuse to do to her again, since she's already had 3 of them! So I am a little ticked off right now.

And, just to really make things FUN over here, my OB/GYN, whom I love BTW, is sending me to a high risk preganacy specialist because I am retaining way too much fluid and have too much edema (swelling) of the legs despite several rest periods with my legs up.

I am pretty stressed and upset now, and don't really know what i want to do. I keep giving Jazz maalox when she refluxes, which seems to work. But she is getting at least 2 doses a day. But really, what can I do????????

Nov 10, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
So sorry! I should remember, but when are you due? Sorry, my memory is terrible.

I wish I could help you. All I can say is take a deep breath and try to take it one day at a time. Hugs!

Nov 10, 2008
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.
I am sorry things are not going well for you right now. I hope that she does O.K. on the motilium.

When Katie was really bad she was on Mylanta 4 times a day. It's hard to do but it sure makes them feel better.

I hope you feel better soon.

Nov 10, 2008
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 all, I'm due in Feb Melissa...soon!.

Julie, 4 times a day was OK with your GI?

Nov 10, 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
oh hon, I can't believe you are still going through all this :( And very pregnant to boot. I can't help with the maalox, because we were advised against it. Not sure why to this day, actually. I hope the motilium helps move things along so she's not refluxing as much, but I would be as frustrated as you are, because you are adding stuff back when you thought her dx would mean a different treatment. And another poop test, ugh. I don't understand what another ph probe would do anyway. She's already being treated for reflux. I almost want to say "lucky you" because our hospital doesn't do them, and I've always wanted to know for sure how severe Ror's reflux was/is. But 3 tests on a teeny tiny kiddo like Jazzy must not be much fun. Yuck. Get those feet up, mama!! I wish I could come and help you out. There's only one province between us.....but it's far enough, lol.
Nov 10, 2008
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...If ever I'm headed West, I'll definately stop in to meet you two!!
Nov 10, 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
we're East! Halifax.
Check with your
doctor first!