Posted By Posting
Sep 03, 2008
blueleopard
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.
Confirmed: Eric has e.e./OT- I'm not well - what could this be?
We finally received a call from Eric's GI Dr. confirming that the biopsies showed e.e. for sure. He had 36 eosinophils in the esophagus area. Stomach & duodendum were normal. For comparison, a normal person has maybe 0-3 and I think he said up to 15 could be indicative of severe reflux (on the boardline of e.e./reflux. So, it's pretty bad. Next, apt. is in Oct. at the Children's Hosp. of Phila. They will be doing patch testing to look for delayed onset food allergies and much more. On top of all this, I haven't be feeling right for over 3 weeks now. I have had a horrible feeling of a tight throat that gets worse as the day goes on (eating/drinking?), upper abdominal discomfort/swelling, weakness, & two episodes of pressure in my chest. The ER let me go & said it was stress (over a week ago - but I KNOW IT IS'NT. Tomorrow I see a GI Dr. who squeezed me in. I am at my wit's end trying to figure out what it could be. My primary Dr. put me on Prevacid, but that only seemed to make it worse. Sorry so long, I'm just stressed to the max & unloading. Hope all is better with your little ones. ellen
Sep 03, 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
oh, man, I'm so sorry you are having such a hard time. :( If you don't feel right, do not take stress as an answer. Pressure your doctor to figure it out. Stress can take a huge toll on one's body, and while it could be a cause of these symptoms, more often than not, stress acts as a trigger to other health issues. I hope the GI will be of help. HUGS!!!!
Sep 03, 2008
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
I'm so sorry to hear of the ee diagnosis. At least now you finally know what you're dealing with and can find some help for him. I hate it that they are making you wait an entire month for an appointment. Did they tell you what to do in the meantime?

I agree with Michelle about how you're feeling, do not take stress as an answer. Trust your instinct. Has your blood pressure been ok? I would maybe make an appointment with a cardiologist for a work-up - just to be sure. Sending huge hugs to you.

Sep 03, 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 remember first meeting you and how sick your poor little man was over a year ago, i followed your journey and although the diagnosis is EE i am just glad you have one for him. I am so sorry it has to be EE but as heartbreaking a dx as it is i am glad that you know what he has so you can go from there. i will pray things will only get better from here. *hugs*

i agree with donessa ask for a cardio work up and also keep an eye out for fevers, although it is possible to have infections without them it is rare. don't let them go with "just stress" i hope it's nothing serious!
Sep 03, 2008
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
((HUGS)) You have been, and are going through, so much. I wish we could all take a little of your burden to share the weight, but know that we are all here in support of you... Keep us posted.
Sep 03, 2008
mommy2max&lucy
Patti, mom to Max (3/04) with EE and chronic sinus issues; Lucy (6/07) with reflux
Hi Ellen...Sorry to hear that the EE was confirmed. Hopefully, though, this diagnosis will get you and your son on the path to a healthier, happier life. We went through patch testing at CHOP as well...it wasn't useful for us as the only two positive allergens on the test were Max's first two foods he passed. But, I have heard others have great success. Like all allergy testing, it needs to be taken with a grain of salt. I am sure you have already started this, but do you have a food diary? This may be a helpful first step. Also, will you be meeting with a nutritionist while at CHOP? They were extremely helpful for us. Sorry to hear that you are not feeling well - I completely agree with the others - don't take stress as an answer. Fight just as hard for yourself as you do for your son. As you are probably aware, EE is thought to have a genetic component. Several of your symptoms sound like EE symptoms. I know of several parents that have been diagnosised after getting a diagnosis for their child. Good luck and let us know how tomorrow goes. - Patti
Sep 03, 2008
rissaroo
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
(((big hugs))) I am sorry to hear about the EE! I hope that you will get some answers, and some help getting him better. At least now they know how to treat it, I guess. And I'm sorry you're feeling crummy, too! Just FYI, Isaiah felt worse on the Prevacid for a couple of weeks, before it started getting better. I agree w/ everyone...if you're still feeling sick, don't take "stress" for an answer! My "stress" related GI condition turned out to be Celiac disease and lymphocytic colitis...and there was a lot I could do to make it better, contrary to what I kept being told for years. Hopefully what's going on with you is a quick and temporary thing, but for sure you want to know that it's not something serious...otherwise, how are you supposed to NOT be stresses? (((more hugs)))
Sep 03, 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
Sorry to hear of the EE dx(((hugs))) What treatment is being planned? Has he already been doing elimination diet? The allergy testing may not pick up anything, dont be surprised if everything comes back negative. Hopefully it will give you something though.
Sep 03, 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.... :(
Hey Ellen. That was certainly not what I wanted to read this morning. I was really hoping that you would be getting a better diagnosis than that for Eric. I am just so sorry. I know it is good to have a diagnosis, but you might need to take alittl etime to let it sink in, you know? If it were me, I'd probably have to do a lot of screaming, banging around, asking why me, etc, before I could move on and start helping my son. If you need to get it out, GET IT OUT. Then you can move on. Ther eis also the very distinct chance that it is just a ew foods that are making Eric sick. Even one. Has he ever seemed comfortable? Was there a point when he tried something new and just never got better?

As for you, are you sure it is not GI related? I know anyone can have heart issues at any time (I have a hear murmur), but you are so young and healthy. I am wondering if it could be somehow food related. When did it start?

Please email me if you need anything at all. mdbarbagallo@hotmail.com

Sep 03, 2008
kmom
Worry Wart mom to
27 mo. reformed "happy spitter"
34.8lbs , 37in tall(oct)
Diagnosed A/R at 6 wks
Zantac until 1yr then Prevacid
Med free since February 08
peanut & egg allergies...still
Zoo Boo Trick-or-Treating (pic).
Hi Ellen. Sorry to hear this about Eric. I hope they can give you some reassurance and effective management techniques. Could you have allergies also? Not necessarily food but environmental? That could cause you to have an asthma attack that would feel like tightness in your chest? Keep us updated. ~ Ronya
Sep 03, 2008
amber f
I can't add anything but (((BIG HUGS)))
Sep 03, 2008
soik2000
Hugs! I was in your shoes three weeks ago. We went through patch testing and found out my son has delayed reactions to wheat, soy, milk, and eggs. Nate's eos count was also 35. I was told by our allergist that we were lucky to have some results from the patch test most ee kids just have to go through trial and error. There is a lot of good resources out there so you are not alone. I too thought answers would be some comfort but it does not right away. At least you know what you are working with. check out this video http://gallery.mac.com/rebecca.stewart1#100000 you can get some support at http://www.parent-2-parent.com/forum/forumdisplay.php?f=119 I am sure you have been doing your research but if you need anything or just to vernt I am here.
Sep 03, 2008
soik2000
forgot to include my email. jenhoos1@yahoo.com
Sep 03, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
Hi Ellen. I'm so sorry to hear of Eric's diagnosis. I'm glad that you now have answers but I am so sad that he has to go thru all of this.

when i'm really stressed, i feel exactly as you are discribing. it could be GI related from stress. however, you can always ask them to run the tests (EEG/EKG & stuff) just to be sure... take care of yourself.
Sep 03, 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.
Hope you feel better soon. It is hard enough when our little one's feel bad and even harder when we all feel bad. Pain is no joke. I hope you will get a better response from the GI. Do you know if you have food intolerances. Dairy and almonds do this to me. I hope you will keep searching till it resolves or u get an answer. Wishing you the best. Sending u hugs.
Sep 03, 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
I forgot to add, if you would like to chat sometimes, as my son has eosinophilic disease, my email is mama24monkeys@yahoo.com
Sep 03, 2008
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
My friend just had the same thing. She felt like she had something stuck in her throat. SHe was also under stress. SHe had endoscopy and what do you know it was reflux. SHe was put on Prilosec. My DH is also on Prilosec.
Sep 03, 2008
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
oops- prilosec didn't work for her. SHe takes nexium.
Sep 03, 2008
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!
Sorry about Eric! About you...one of my coworkers was describing the exact same thing the other day. She is also under lots of stress. She just went yesterday for a lot of heart related tests and stuff.
Sep 04, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
Photobucket
So glad that you have a starting point now, and that there are others here going thru the same thing who can be of some help!
Sep 04, 2008
blueleopard
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 really want to thank everyone again for your thoughtful responses/e-mail addresses/links/etc. If I can figure out what is wrong with me (my GI apt. is 12:45 today) & it is something fixable, I will be more up to the challange of helping Eric. I also have a daughter who started highschool today & a daugher who started fourth grade today. I need to be in full-working order to be there for all my kids-lol. I have never really had allergies, food intolerances, or asthma. Eric definately gets it from his Dad's side. His grandpa was telling me the other day about the horrific allergies on his mother's side (Eric's great-grandmom). I'm hoping I don't have anything liver related because I did have a toxic reaction to iron pills a while back. The corners of my eyes (the whites) seem yellowish. Anyway, Eric is going to a local allergist tomorrow - where we are going to demand a CAP-RAST blood test. I realize it is only a tool, but he's never had one & maybe it can shed some light until we get to CHOP. God Bless All & Thanks, El
Check with your
doctor first!