Posted By Posting
Nov 21, 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.
Well, I'm doing it!!
I'm taking Jazzy off almost all solids...save for the few that I know she most likely doesn't react to. I found a great tasting potato milk that I will supplement with something called Nano VM, for all vitamins and minerals, until and if I can get her to drink Neocate. My Dr still has not called me back yet (I've been calling since Monday!)

I'm keeping her on some fruit, broccli and carrots, sunflower oil and paste, avocados, potatoes, and oats. I'm debating on wheat still, I really don't feel that she reacts to it, and her biopsie was Neg for celiacs. I'm definately going to be asking for some simple meal ideas from you ladies!! If anyone has any suggestions I'd love to hear them.

Brenda :-)

Nov 21, 2008
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.
wheat and oats can still be difficult if she is going through a cycle of diarehea. i don't know if it reacts with EE or not but just from my experience with emily i would keep all the foods you mentioned but leave out the oats and wheat for a couple weeks till her system normalizes and then ad them in. i hope she does well on her potato milk! i never heard of it!
Nov 21, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
I have heard of potato milk just wondered what it would taste like and how Adriane would do on it. Let me know how Jazzy does. I hope this is successful and brings some relief. -Amanda
Nov 21, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Brenda,

I hope this works for Jazzy. Wishing u the very best.

Nov 21, 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...Kat I think I'll do that, at least for a month. I can always add them in after if she does well Right?

mom2adriane&morgan... the potato milk taste way better than rice milk...and 3 days later she is loving it. I'll let you know how she does after a couple of weeks.

thanks engi, hope Meggy feels better soon!

Nov 21, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Cooper defiantly has yucky stools with oats as well and we don't do wheat at all yet. I really hope this helps. Can she do rice. i have some recipes with those things and rice I believe. Good luck!
Nov 22, 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 MollyBeth, I'm trying to avoid Rice because I have a suspicion that she may have a difficult time digesting it. I think I will avoid oats aand wheat and just see....I'll take any recipies and just substitute potato flour or potato milk!!!
Nov 22, 2008
seamus mama
Seamus was diagnosed with Silent Reflux at 3 weeks. Now he is 14 months, on Prilosec and avoiding dairy,soy,egg. Still nursing. A lot !!!
The potato milk sounds fascinating! It would be a good nutritious drink for any little one. Hopefully the measures you are taking will halp Jazzy out..(thus help you out, you must be soo tired)Let us know how it goes!
Check with your
doctor first!