Posted By Posting
Jan 07, 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.
GI actually called me back..
And the nurse was pretty disrespectful. She told me that Jasmine's negative reaction to Neocate was probably because she didn't like the taste????WTH? Did she actually say that to me??? Anyways, she also said that her GI Dr. would like us to start using BIO-K probiotics, despite the fact that they may contain milk. She said Jazz doesn't have a "true" allergy to milk so it shouldn't bother her??? Again...did she just say that to me? I told her if she continues to act the way she does, eating very little etc.. that I would bring her to the ER...no response?

Anyways, we are to see immunology on the 20th, so she tld us to pass by the GI dept. for an update......

This nurse has never been like this before with us....very strange. So hopefully I'll know more after the 20th...

Jan 07, 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.
Oh yeah, she also added that they want to repeat allergy testing. At least that part was sensible!!!
Jan 07, 2009
nicholasmom
Renee, mother to Nicholas, born 4/18/08 with silent reflux, moderate laryngomalacia, Sandifer's Syndrome& suspected MSPI. On Neocate, Simply Thick and Prevacid. Also mother to Nathan, born 12/06/06, who had mild reflux the first few months.
Yeah, the repeat allergy testing does sound sensible (though not fun ). It's my understanding that allergy testing in young one's can have a lot of negatives that later turn positive. Good luck. Let us know how it goes.
Jan 07, 2009
nicholasmom
Renee, mother to Nicholas, born 4/18/08 with silent reflux, moderate laryngomalacia, Sandifer's Syndrome& suspected MSPI. On Neocate, Simply Thick and Prevacid. Also mother to Nathan, born 12/06/06, who had mild reflux the first few months.
Nicholas's allergy testing showed what the doctor called "such a little response it's not considered an allergy" to milk. He told us to try a milk based formula. After 4 days or so, he was so miserable we went back to neutramigen and he has been much happier. I believe the body reaction trumps over the allergy testing.
Jan 08, 2009
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!
All I can say is ugh. Is this nurse a mother? I know they have bad days just like everybody else, but I hate it when you've been waiting so long and then that's all you get.
Jan 08, 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

Brent was actually allergic to Neocate, it does happen, but its pretty rare.Maybe you could try elecare??

As for the probiotics, if they have milk in them, I wouldnt give them to her if I were you, since it can trigger an eosinophilic reaction. There are some probiotics without milk that you can try instead

I am trying to figure out why she hasnt been tried on some prednisone yet, it may help speed the healing process by taking down the inflammation. Prednisone is the only thing that for sure will usually reduce the eosinophils.

Since she is taking in so little and still having such a tough time, have you guys discussed tubefeeding only elemental formula yet? It may be time to look into that(I know that isnt something you want to do, but I'll say it was the best thing I ever did for Brent) I am sorry she continues to struggle, many hugs for you guys!

Jan 08, 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.
Thanks Jessica, I am going to mention prednisone at her next visit and if they are not intersted in starting her on steroids, then we are heading to Cinncinnati. I thought about Elecare, but am actually afraid to start another formula after that horrible reaction to neocate...silly I know. I will also mention tube feedings, although I don't want to, her weight of 21lbs at 2 years old is just too little (2 lbs gain in one year). Thanks for your info, always appreciated Jessica
Jan 08, 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
Shoot ,even with tubefeedings 24/7 Brent is still down 2 pounds, weighs what he weighed a year ago....I dont get it...
Check with your
doctor first!