Posted By Posting
Sep 29, 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.
Jessicalynn and katiesmom
Do any of your LO's take and Meds for heir EGID? Jazz does and I'm wondering any anyother LO's are on meds....I posted similar under subject: Sodium Cromoglycate...Thanks, Brenda
Sep 29, 2008
katiesmommy
Tracey, mom to Katie. Diagnosed with reflux at 3 weeks and put on Zantac. At 8 months old she was removed from Zantac as it was giving her migraines, currently on Prevacid. Switched to Elecare since she is not gaining weight; trialing solids after being off for a month. Geneticist said reason she isn't gaining weight is she is stubborn. Upcoming appts.: Neurologist for developmental delay and EGD scheduled for September. She is one funny baby!

Hi Brenda! Katie didn't have the sigmoidscopy( or what ever it is called); I was asking you if Jazzy had a high number of wbc in her stool or blood since Katie did but the dr. didn't think it was too high so she didn't do that end of the endoscope. Katie's problems have always been refluxing/throwing up. Her biggest problem stool wise is that they are awfully solid for a baby who is mostly on elemental formula and pears. The only time they were how you would expect baby poo to be is when I solely nursed her.

I suspect Katie has food intolerances since she can't have anything remotely solid or she throws it up but allergy tests came back negative.

How is Jazzy feeling?? How are you feeling? When are you due? I hope this new medicine helps her to feel so much better! Hugs!

Sep 29, 2008
katiesmommy
Tracey, mom to Katie. Diagnosed with reflux at 3 weeks and put on Zantac. At 8 months old she was removed from Zantac as it was giving her migraines, currently on Prevacid. Switched to Elecare since she is not gaining weight; trialing solids after being off for a month. Geneticist said reason she isn't gaining weight is she is stubborn. Upcoming appts.: Neurologist for developmental delay and EGD scheduled for September. She is one funny baby!
I too took this but as Nasalcrom for allergies. I stopped it b/c it was an aerosol that bothered my throat after being "misted" into my nose. (I just googled it)
Sep 30, 2008
jessicalynn
Brent 2 years old,
Birthweight 12 lbs 3.3 oz!
Very severe GERD,LPR,FTT
Severe esophagitis/scarring
Paraesophageal Hiatal Hernia,
Esophageal Dysmotility,
Food impaction,Aspiration
ALTE,Dysphagia,Odynophagia
Eosinophilic Esophagitis,Severe retching
Severe allergic colitis/malabsorption
Susp eosinophilic colitis,chronic diarrhea,
Laryngomalacia,Gas/Bloat Syndrome,
Visceral Hyperalgesia,GI Dysmotility,
Chronic infection(ear/sinus/lung)
Adenoid/tonsillar hypertrophy
Gait abnormality/bowlegs,widened growth plates
Susp Vagus Nerve Damage
Surgeries, Nissen fundo,hernia repair/
reconstruction,esophageal dilation,gtube,
ear tubes,adenoidectomy
Bronchs w/ BAL's,lung biopsy
Upcoming scope/colonoscopy
Manometry testing in Oct.
Meds: Nexium,Zantac,Baclofen, Neurontin,
Zofran,Pulmicort/Splenda,PrednisonePRN,
NPO tubefed continuous elecare 24 hours/day
Brent is on all elemental diet, during which he developed EE(very uncommon) so now we have added in budesonide. He also does Prednisone as needed. I hope the new med helps her quickly!
Sep 30, 2008
jessicalynn
Brent 2 years old,
Birthweight 12 lbs 3.3 oz!
Very severe GERD,LPR,FTT
Severe esophagitis/scarring
Paraesophageal Hiatal Hernia,
Esophageal Dysmotility,
Food impaction,Aspiration
ALTE,Dysphagia,Odynophagia
Eosinophilic Esophagitis,Severe retching
Severe allergic colitis/malabsorption
Susp eosinophilic colitis,chronic diarrhea,
Laryngomalacia,Gas/Bloat Syndrome,
Visceral Hyperalgesia,GI Dysmotility,
Chronic infection(ear/sinus/lung)
Adenoid/tonsillar hypertrophy
Gait abnormality/bowlegs,widened growth plates
Susp Vagus Nerve Damage
Surgeries, Nissen fundo,hernia repair/
reconstruction,esophageal dilation,gtube,
ear tubes,adenoidectomy
Bronchs w/ BAL's,lung biopsy
Upcoming scope/colonoscopy
Manometry testing in Oct.
Meds: Nexium,Zantac,Baclofen, Neurontin,
Zofran,Pulmicort/Splenda,PrednisonePRN,
NPO tubefed continuous elecare 24 hours/day
Budesonide is a steroid usually used for asthma, but we mix it with splenda to make it thick and sticky and he actually swallows it so it coats the esophagus and treats.
Sep 30, 2008
jessicalynn
Brent 2 years old,
Birthweight 12 lbs 3.3 oz!
Very severe GERD,LPR,FTT
Severe esophagitis/scarring
Paraesophageal Hiatal Hernia,
Esophageal Dysmotility,
Food impaction,Aspiration
ALTE,Dysphagia,Odynophagia
Eosinophilic Esophagitis,Severe retching
Severe allergic colitis/malabsorption
Susp eosinophilic colitis,chronic diarrhea,
Laryngomalacia,Gas/Bloat Syndrome,
Visceral Hyperalgesia,GI Dysmotility,
Chronic infection(ear/sinus/lung)
Adenoid/tonsillar hypertrophy
Gait abnormality/bowlegs,widened growth plates
Susp Vagus Nerve Damage
Surgeries, Nissen fundo,hernia repair/
reconstruction,esophageal dilation,gtube,
ear tubes,adenoidectomy
Bronchs w/ BAL's,lung biopsy
Upcoming scope/colonoscopy
Manometry testing in Oct.
Meds: Nexium,Zantac,Baclofen, Neurontin,
Zofran,Pulmicort/Splenda,PrednisonePRN,
NPO tubefed continuous elecare 24 hours/day
Katiesmommy, I know of some people whose LO's have Eos Gastroenteritis whose children have had constipation as a symptom. Vomiting is also a symptom of Eos gastroenteritis, as well as Eos Esophagitis. I am gonna put an article up here for you to look at .
Sep 30, 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 ladies.....Katiesmom, Jazz had a low white count, but the Eos were a little bit higher than norm...not too much though. It was really through the colonoscopy that they found an upward of a 30 count of Eso. in her transverse colon.

Right now Jazz feels like crap, and she is hardly eating anything. I can't get much into her and we're now trying an elemental juice/milk called Splash, but she won't touch it, even if I really dilute it and mix it up..... I think her new meds are hurting her throat or mouth, as she is always complaining it hurts.... I'm sure she'll end up on Prednisone at some point, as I think she's lost more weight again.

I am due on Feb.20 2009 and I am pretty tired, since Jazz doesn't sleep much when she feels like this, I just hope we can get her to a point where she is feeling well most of the time before the baby comes. Also she's been in pain for almost 2 years now...way too long.

Check with your
doctor first!