Posted By Posting
Sep 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.
We have our biopsy results and.....
Finally a diagnoses!!!! Jasmine has 30 Esinophils in her large intestine. So she doesn't have EE, but it is a very large number, and we basically have to go off of all foods that are highly allergic. Having that many esinophils can cause MAJOR colitis and is a wonder they found so much inflammation. We are to see a dietician soon, again, and we are to go on a new Med 4x a day :-(......I didn't catch the name of the med but will pick it up tomorrow. I am thrilled to finally know something and have a plan!!!!
Sep 22, 2008
amber f
That is so awesome that you have some answers. YAY:)
Sep 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.
Sorry it is a form of EE. EE can be present in the esophagus, sm. intestine or large. Hers is the large. I am NOT happy about an EE diagnoses but I am happy to have a diagnoses...KWIM?
Sep 22, 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
Eosinophilic COlitis is the name of it. Sorry to hear she has it, but glad you got a dx. Unlike EE, it may possibly be outgrown,I have read.
Sep 22, 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
EE means Eosinophilic Esophagitis, EC is Eosinophilic colits, EG is Eosinophilic Gastroenteritis,all are EGID, Eosinophilic Gastrointestinal Disorders. Food allergy Network has Eosinophilic disorders Forum, so does P2P, and check out APFED(American Partenership for Eosinophilic Disorders(www.apfed.org) and Cured(Campaign Urging awareness for Eosinophilic Disease)(www.curedfoundation.org) There isnt as much info on eos colitis as EE or EG, but there is some infdo out therre, particularly in the Eos Forum at Food Allergy Network. My son has severe Eosinophilic Esophagits and is highly suspected to have Eosinoiphilic Colitis as well,colonoscopy soon to confirm. Hope the info helps!
Sep 22, 2008
maiam
maia m - GERD. Nissen Fundoplication w/hiatal hernia repair.
Mom to
Son (10) GERD(aspiration pneumonias, apnea, tracheomalacia), Food allergy, Asthma
Daughter (6) GERD, Heart Murmur, Food Allergy, Asthma, Mold allergy
Great eos info in eos forum at kidswithfoodallergies.org , apfed, cured.
Sep 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 all, I guess my Dr called it EE- Esinophillic enterocolitis. But I also understood it as EGID. I will look up more info and I'm sure I'll be posting questions!
Sep 22, 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
I'm sorry for the diagnosis, but at the same time, THANK GOD for answers, particularly in Jazzy's case, where she suffered for soooo long. Answers lead to treatment. I pray you get good sound medical professionals to treat her. Give yourself a pat on the back, Mom, for not giving up on your kiddo! HUGS
Sep 22, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Ugh! I am so happy you have a diagnosis, and I am sorry that it is this one! It sounds to me, though, like it is something that is going to heal with time and the right diet (kind of like Sebastian's issues, although they are different...same deal, though). So the doctor finally called???

I am glad you have an answer. I swear, not knowing is so much worse. Hugs to you all!

Sep 22, 2008
nicholas'smom
SOoooo glad you finally have an answer and a plan of attack. You must feel so much better to know what it is.
Sep 22, 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
Sorry for the EGID dx, but it is good to have an answer of sorts. I a,m so proud of you for bf through all the issues and you are such an inspiration to me. I hopr that her new med helps and things work out!
Sep 23, 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.
i must be crazy b/c i see this dx as a big step in helping her get better. I wish she didn't have it but it 's great you know what it is now. Trust me i know how you feel i went through the same thing when i found out emily;s CSID diagnosis i felt it was horrible and sad and why her and what in the world will i do, but really with time it got less overwhelming and her Dx turned out to be a really great thing b/c i know how to help her stay well. Make sure to research your nutritionist and make sure they have a background in what they are telling you, it will help a TON.... i wish i had. *HUGS*
Check with your
doctor first!