Posted By Posting
Mar 02, 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.
Is it possible?
Hi all,

Just wanted to update you guys. Jazzy tried a pure amino acid supplement and couldn't tolerate that either. Where does this leave us? Baby's crying, I'll write more but wanted to get that out there...........

Mar 02, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
did you just start it?? it will take several weeks to a month for the gut to heal enough to tell if it working or not.
Mar 02, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I'd say the same as Jessica. It can take a bit to see if the formula will be tolerated.
Mar 02, 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.
It has only been a couple of days...but she justs gets worse and worse. Everydays worse than the next. Would you really continue?
Mar 02, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
We stuck it out for a month with each one. And yes, sometimes it was shear heck. Are you sure that her dose of Nexium is enough to cover???
Mar 02, 2009
noor117
Strong, Beautiful, daughter who is thriving beyond imagination and a healthy, happy 3 year old.
I am sorry that Jazzy is still having such tough time. We are still at 18 pounds, but Meggy is maintaining on Ultracare for kids. We are not sure what our next step will be at this point. Meggy seems to go in cycles with her pain level, so I can't tell u if it really helps in that regards.

When u say she isn't tolerating it, is she vomiting, or just crying constantly or what? Levsin worked for us for a while, but then Meggy showed all of the serious side affects of it.

I hope u are able to find a solution soon.

Check with your
doctor first!