Posted By Posting
Oct 03, 2008
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
I was reading some of your responses and realized how much knowledge you have on the eos disorders. Thanks!! Out of curiousity can I ask you two things about Brent: 1. What is his birth date and how tall is he now? 2. Does he have food allergies that show up on scratch testing? My son has food allergies, e.e., reflux, constipation, eczema on his eyelids (ouch), asthma, etc. He is so darn short, but I can't figure out if it's because we aren't huge (5'4 & 5'10) or due to all his issues. He eats what he can & two bottles of Neocate per day. We go to CHOP for e.e. evaluation in three weeks. Where do you take Brent? Are your other children healthy? (if you have others). Opps, that was 4 questions. Take Care, Ellen
Oct 03, 2008
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
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,
NPO tubefed continuous elecare 24 hours/day
Hi! Brent had no allergies show up on any testing other than milk, which isnt uncommon in EGID. He was born 6/9/06 iweighing in at 12 pounds 3.3 ounces, 22 inches long. Really lol, I even have pictures of proof lol. He got sick within the first week of life with vomiting,very severe allergic colitis(pooping diapers FULL of blood), etc. He has had severe primary GERD, with severe damage to his esophagus, a paraesophageal hiatal hernia,severe colitis/malabsorption,chronic diarrhea, FTT,Aspiration of reflux/Aspiration of Solid Food/Resulting in Pneumonias,breathing problems,ALTE,food impactions in the esophagus,he has Esophageal and GI Dysmotility,Visceral Hyperalgesia which is a nerve damage related pain disorder,Dysphagia,Odynophagia,Laryngomalacia,Tracheal Cobblestoning, susp.Vagus Nerve Damage, he also has had eczema,gas bloat syndrome,severe retching,chronic infections,. He did ng tubefeeding due to severe GERD,chronic dehydration,FTT,Diarrhea, then we moved on to gastrostomy tubefeeding. Hes had many procedures, fundoplication, a lot are listed in my siggy.He had another scope and bronchoscopy about 4 months ago to check out the condition of his lungs/airways,esophagus and his fundo, and they found EE as well which was quite a surprise. EE really hasnt changed anything for us, because he has already been on elemental formula and was NPO already due to aspiration. He is an oddball, because its weird that he developed it on elemental formula, as that is the treatment for it. He is really short, I cant remember his height exactly, but he is dx as short stature and also FTT.He also has a Gait Abnormality and very bowed legs from nutritional deficiency. He takes a lot of meds.Brent sees a Ped GI, Ped GI Motility Specialist,ped pulmonologist, Ped Surgeon,Ped Endocrinologist, Ped Orthopedic,Ped Immunologist/Infectious Disease Spec,ENT,Speech Therapists,Occupational Therapist, etc. They are spread all over but the majority are at the University of North Carolina at Chapel Hill Children's Hospital, the GI Motility dr is from Johns Hopkins. I may take Brent to Cincinnati to Dr Rothenberg if I need to if the steriods he is on dont help, but right now he has some bigger issues than his EE( not to undermine it at all,its a horrible disease, please dont take that the wrong way) he has been through enough,he cant eat anyway, and he is getting ready to undergo some more invasive testing and procedures. They think he has Vagus Nerve Damage, which is very serious, basically means his GI system will never work right again. :( My other kids are not healthy, they also have GI issues, but not as bad as Brent. Trey has GERD, does not have EE, he has been scoped , Irritable Bowel, allergies to Penicillin,nickel,enviro allergies,eczema. He just sees a Ped and a GI, takes Nexium,Zantac PRN ,Miralax,CLariton,Elidel PRN,. Christian has not been scoped due to improvement with meds, has had other GI testing, he has GERD caused by slow motility,mild asthma, slow transit dysmotility/chronic constipation,enviro allergies,ear tubes. He sees Ped GI,ENT,Ped. He is on Prevacid, Zantac PRN,Singulair,Miralax,Albuterol. Lauren does not have EE, she has been scoped she does have bad GERD,slow motility,chronic constipation,bad asthma,milk allergy,bloating/severe stomach pain,recurrent UTI's,ear tubes. SHe sees Ped GI,ENT,Asthma/Allergist,Ped Urologist. SHe is on Nexium,Zantac,Reglan,Bentyl,Simethicone,Miralax,Pulmicort, Albuterol,Zyrtec. All are constantly sick lol.There is a strong family history of allergy/asthma in our family, and I was shocked that Lauren and Trey didnt have EE honestly, their symptoms fit, but nope, really bad GERD, whcih is just as bad because I cant take away food that makes them sick so they will get better, which sucks:( My DH is also in remission of STage 4 Hodgkins Lymphoma. This is sooo long lol, sorry. I am a SAHM, and my kids have had so many GI issues, I read ALL DAY in between chasing kids lol, I guess thats how I know a lot about the subject, plus my own personalexperience and that of others I have met. Have you started any treatment with Eric yet? How is he doing? I hope the CHOP appt goes well:)
Oct 04, 2008
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
OMG - I'm not sure how you are handling all of that. I'm so stressed out with Eric's issues. My middle daughter seemed pretty healthy until age 7ish (except for bad constipation), but then developed seasonal-type allergies/cough varient asthma. She is allergic to cats, mold, pollens, amoxicillan, dust mites, etc. She seems to get/stay sick more often now, as well. My oldest daughter has a problem with some antibiotics & mildly cats/dogs/dustmites, but her father was my ex. & didn't have the allergy issues that my current husband/& his family have. Eric goes to CHOP Oct. 23rd & I am both happy & scared to go. I want was is best for him, but I don't want him to be a child that doesn't eat or god forbid, needs a tube. Like you mentioned, I think it can create both nutritional difficiences & eating adversions. Plus, like in your case, it may not prevent the e.e. They really don't know enough about this disorder/it is considered fairly newly recognized. It is so ironic because I lost a daughter 16 years ago, to a heart defect that was major & the surgeries to correct it were just being developed/perfected. It's almost as if I'm living that nightmare again. She was 1 1/2 when she passed. Anyway, thanks for getting back to me & I hope all the best for your family & all these poor kiddos. Ellen
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