Posted By Posting
Sep 27, 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.
engin and other mom's with ESO GI's
Meggy has EG is that right? Jasmine has EC (colitis). But I was wondering if Meggy's allergy testing was positive for anything? I ask because Jasmine's were all Neg. (just intolerances) and yet I was told that all babies with EGID had to have some allergies due to the nature of the disorder (ie. having so many Eosin. in one area) My GI told me that my baby's only reaction might be a GI reaction...making it difficult to tell when it's an allergy and when it's just the eosino. releasing toxins that cause the GI upsets.....Does this make any sense to you? What have you notice with Meggy?
Sep 27, 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!

Brenda, did they do any blood work on Jasmine and test for EE's? They did with Katie and she had 4 or 5 in her bloodwork and she had white spots in her throat with unknown orgin but normal pathology and she refluxes up every thing but pears.

Sep 27, 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 tested pos to only milk, neg to everything else.It's very common to test neg for allergies in eos disorders. The best allergy testing for EGID's is the patch testing for delayed rxn's, but none are 100% and they still cant absolutely guarantee a food is safe because it tests negative. GI issues may be the only symptom of a reaction. There are also times when there is no allergic component, at least in eosinophilic esophagitis, and it is deemed "non allergic"form of eosinophilic esophagitis, a type of autoimmune disorder.
Sep 27, 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.
Yes, Meggy has E.G.
Meggy tested positive for soy and milk on her skin scratch test. On her first blood test, she tested positive for pork and shellfish. We have not yet received the results of the second blood allergy test. What lab ran your test. We were informed that labcorp is anything but reliable. They refuse to adhere to the standards and times needed for accurate diagnosis. Therefore any results from them showing negative to allergies could be invalid.

The John Hopkins Docs. seemed so knowledgeable. They told us that there are likely allergies that she has that will never show on any kind of test other than biopsy because her allergies are so down in the digestive track.

Meggy's Eosinophils are in the stomach and intestines. So far we know that teething, corn, soy, dairy, strawberry, and vanilla set her symptoms off worse than you could imagine. Yes the eosinophils do release toxins, but the more exposure to allergens, the more eosinophils you can get and hence the worse reaction because more toxin is being released.

Meggy never tolerated any infant formula for more than a week including the elemental ones. She would be okay generally for 5 days and then out of no where start vomiting all over the place.

When I couldn't find a doctor who knew anything to help us, I started keeping a food diary. I would use word or open office and cut and paste the ingredient list into it. That way I could go to the search box and type in a certain ingredient and every ingredient list that I had in the one doc. would pop up that ingredient. That is how I discovered corn in everything she had eaten, and how I discovered there was more corn than anything in the things she reacted the worst to.

I called every formula company I could find and talked to their nutritionist. I broke down ingredients in everything she ate and kept list constantly.

http://www.otherinfo.org/index.php?title=Other_Names_for_Corn

It is hard to know just what you are eating. To give u a good example. The list above tells a lot of name for corn. Have u ever tried her on a corn free diet? Or to eliminate certain foods one at a time. Like starting with eliminating dairy, then soy, then corn, and so on until she finds some relief. Corn is the hardest I find to eliminate.

Sorry I rambled on. Not sure if any of this is helpful. Something else to consider is that our little one's have been exposed to sunflower, safflower, canola and other oils since beginning formula.

Let me know if I can be of further help. I also joined the E.G.I.D. group on facebook. Holly is very kind and helpful.

Sep 27, 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.
Tracey,
R u saying blood eosinophils would coorelate with biopsy eosinophils.
I hadn't heard this before so I am learning something knew.
Sep 27, 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!

Engin~ not sure but they have rechecked her stool and blood a couple of times and she has an elevated number of white blood cells in both blood and stool (though not too elevated). We just received the written results of her EGD and she has mild but chronic inflammation and exudate in her upper esophagus. Exudate (according to wikipedia) are present where there is inflammation and can be composed of water, blood, platelets and white blood cells. They were trying to rule out EE but since the only thing Katie eats is Elecare, pears, apples, bananas and apricots I wasn't surprised that they didn't find anything as those are the only things that don't make her vomit or cry at night. She has never been a huge vomiter but does "silent reflux" all day and sometimes bad enough at night/nap to wake her up since i can hear it over the monitor.

My husband is allergic or intolerant to corn and soy so I do know that corn/soy is in EVERYTHING!!!!!!! It is so hard to find items to pack in his lunch that he can have. Fortunately soy lecithin doesn't seem to bother him otherwise I don't know what he would eat.

Not sure if there is a relation to blood born EE's and actual EE. Jessicalynn~ do you know? Katie tested negative to peaches but immediately screams if she has them.

Sep 27, 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
Did they do a lower scope?Colonoscopy? White blood cells in the stool/blood are indicative of EGID, but can also mean infection/virus/parasite, but it really screams eos enteritis/colitis to me rather than eosinophilic esophagitis. From Cinncinnati:EGID symptoms are not universally present (in other words there can be a wide range of symptoms) -- GI symptoms, Anemia, low blood protein, growth failure, peripheral blood eos -- Causes -- Pathogensis: Allergic (food), infectious, drug reaction, immunodeficiency, idiopathic (unknown) -- Non-Allergiec Causes: no apparent immune response to food, immune-mediated -- Treatment: Elimination diet, Elemental diet, steriods, immunomodulators, biologics I also wanted to say that Eosinophilic esophagitis is patchy, if they dont take enough biopsies it can be missed In a hurry baby in everything lol..HTH
Sep 27, 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
White blood cells in the stool without infection and eos in blood can signal eos colitis though push for a lower scope!!!
Sep 27, 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
White blood cells in the stool without infection and eos in blood can signal eos colitis though push for a lower scope!!!
Sep 27, 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
One more thing: The normal number of eosinophils in the body should be the following 10-20 eos per 40xHPF. Gastric antrum <10 Duodenum <20 Colon 10-20 , in infants <10 Esophagus zero eosinophils EGID broken down into the following types: Eosinophilic Gastroenteritis - Eos in 2 or more locations of GI tract. Above normal amount. Eosinophilic Colitis – Eos limited to colon and have excluded other causes Eosinophilic Esophagitis – isolated to esophagus and more than 20 per HPF.
Sep 28, 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 am learning a lot. I know Jazzy's BW revealed LOW white blood count. Yet her colonoscopy revealed more than a 30 count of Eos. in her large intestine. She hasn't had a patch test done, and since all her allergy tests were neg. they call all of her food problems intolerances. Which I highly doubt, I'm sure there are hidden food allergies that she has. I know Milk, soy and peas for sure.....the rest I don't know yet....gotta go, will write more later...someone is screaming!!!!
Check with your
doctor first!