Posted By Posting
Aug 21, 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.
Devastating New Diagnosis
Yesterday we went to Children's Hosp. in Phila. so Eric could have his 2nd endoscope. 1st one was back when he was about 11 mths. old. We wanted to see how he was doing in there; because, even though we are avoiding so many foods, he still had choking spells and put his hands in his throat a lot. I was so nervous about him going under with the asthma, that I really wasn't nervous about the results. When the doctor came out & said it definately looks like e.e. (eosinophilic esophagitis), I almost fell off the chair. Apparently, he has thick folds & white patches characteristic of the condition. We should get the biospsie results back in 4-5 days. This means he may have to go to NO FOODS or even a tube. Later, they may reintroduce one food at a time, but it is generally very limited. Maybe 10-20 foods (if your lucky) total. There is NO CURE. Sometimes this condition is also made worse be seasonal/environmental allergies, which he also has. I had to go to the ER last night myself for chest pressure, etc. which they summed up as a Stress Reaction. Gee, do you think? Then they tell you to reduce your stress. Are they suggesting I put Eric up for adoption???? Please keep my little guy (who has already been through so much) in your prayers. Ellen
Aug 21, 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.
I'm sorry you guys are going thru this. We have a scope next week so I feel for you guys....HUGS and PRAYERS
Aug 21, 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
((((big hugs)))) I was so hoping it wouldn't be ee. How far are you from Melissa's wonderful allergist? You're doing a great job - hang in there. We'll keep Eric (and you) in our prayers.
Aug 21, 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, I am so sad to read this :(. Poor little guy. I know it is a very difficult time for you right now, but having a diagnosis finally will really help him to feel better, and as he feels better so will you. You've certainly had a long struggle with Eric. My heart goes out to you both. I can't tell you not to worry, because we all do it, and there are lots of unknowns in your near future.... Be sure to get some support where you can. BIG HUGS.
Aug 21, 2008
ceramom
Sarah
mom to Mila 2-20-2007
and Robby 4-22-2004
Mila is on Peptamen JR 30 cal by NG tube. Open Heart Surgery 2/08/08. Captopril, Zantac, Losec, Lasix.
Please let me extend my sincerest, deepest, most heartfelt thoughts towards you. Next, let me suggest you join us over at parent-2-parent.com/forums , where there is an ENTIRE BOARD devoted to EE. And yes... This may require a feeding tube as many of the kids are not willing to drink ( enough of ) the nasty ass formula it requires. I am so sorry you are having chest pains over this... He can and will need special care but he can and will lead a mostly normal life when this is over. There ARE success stories. I promise!
Aug 21, 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.
So sorry Ellen. I was hoping to not hear this diagnosis. maybe the biopsy could come back with different results? my husband had those 'webs' that can also be like ee but the gastro just opened up the whole and his gagging has gone away for the most part... i don't know, just tyring to offer u some hope! hugs:)
Aug 21, 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).
I am sorry to read this, Ellen. When the dr's were looking for that with Korbin they said that they could tell the allergies that caused the EE from a biopsy. Then you just have to avoid the allergens. Was that too simplistic? I hope Eric's issue is something easy to avoid. Try not to project ahead. Stay in the moment and take it step by step. Every problem is easier to handle in smaller pieces than as a whole. I will be thinking of you guys. E-mail me if you want to talk/rant/cry/yell at me. ~Ronya
Aug 21, 2008
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
Oh honey, like you needed anything else thrown your way. {{HUGS}} to both you and your little guy. Sending a fleet of prayers to you!
Aug 21, 2008
amber f
I'm so sorry to hear this. Thinking of you!
Aug 21, 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
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Sooooo sorry! Does this mean he can eat only 10-20 foods in his whole life, or is it something that gets better with age? i can't imagine what you must be feeling right now. *hugs* Poor little guy.
Aug 21, 2008
mommy2max&lucy
Patti, mom to Max (3/04) with EE and chronic sinus issues; Lucy (6/07) with reflux
Life is not over...I promise!
Hi Ellen...we are getting ready to leave for vacation so I only have a minute, but I want to comment. EE is NOT the end of the world...I promise. Our son was diagnosed a day before he turned 1. Honestly, since our diagnosis, he has been getting healthier and healthier each day. Getting a diagnosis is key to getting your child healthy. In addition to the P2P boards, there is a wonderful Yahoo group. I have learned more from those parents than any doctor! Max is treated at CHOP as well - they are really wonderful and have a fabulous program. By the way, our son never needed a tube and now eats about 20 foods...he is a happy healthy 4 year old that attends school, plays sports and has tons of playdates. Handling EE as just another thing and not letting it control our life has been key for us. Learning what works for other parents was also helpful. He still is on Elecare, but with many months of food trials, we have been able to give him a very varied diet. There are several parents on the Yahoo board who have children that only need to eliminate one or two foods at this point. Good luck!
Aug 21, 2008
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
Ellen-I know that it was painful to hear the EE diagnosis but maybe it will provide the relief you are looking for in symptoms. We have had to go back to the liquid diet so many times and it is so hard when they are older and eating food so I feel for you. Hang in there. You guys will figure out a new normal. You are so strong and don't forget to take care of yourself. I have anxiety issues so I have been there in the ER with chest pain before. It feels very real. So try to take it easy and keep us posted when you find out more.
Aug 21, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Ellen, You might want to check this out....

http://www.reflux.darshani.com/

Her DD name is Nitara nd her anme is Darshani. The DD has EE and is doing great. Yes she has a tube but she is healthy and happy.
Aug 21, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Check out this thread and video as well.
Like Sarah said there is a WHOLE board just dedicated to EE issues. Here's the video form a news story that was done on one of P2Ps members. Her DD has EE and is leading a normal life tube free. It can be done. Like Sarah said a tube will o nly be needed if teh child will not take the formula orally because of taste or feeding aversion due to the EE beign caught soo late.

http://www.clickondetroit.com/video/17179036/index.html
Aug 21, 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.... :(
Oh God, Ellen, I don't even know what to say. I feel so awful that you and Eric received such terrible news. I was really hoping that this wasn't going to be the diagnosis. I am pretty familiar, too, with what EE means, as we really thought Sebastian had it. I read about several moms whose kids have EE, and those kids have 50+ foods...which is better than 10-20. I am thinking of you and will certainly be looking for updates. I pray it is NOT EE...that your doc was mistaken. Where are you located? Can you make an appointment with Dr. Wood? He really is a greta doctor...even answers his own phone when I call him 20 times a day. He set our mind at ease like no one else. Hugs to you and Eric.
Aug 21, 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!
I'm so sorry Ellen. I know that's not what you wanted to hear, but at least you have some kind of answer. I don't know much about EE. I'll keep him in my prayers! You too!
Aug 21, 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 am so sorry to hear that diagnosis but now that you know hopefully it will be easier to deal with. Everything will be okay *hugs and prayers*
Aug 22, 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 only have a minute because the Prince just woke up, but really wanted to thank EVERYONE for their support & thoughtful replies. As much as this bites (to say the least), at least now I finally know and can move forward with the best treatment for Eric. It is just soooooooo hard when I see all these kids eating....just eating......the most natural thing in the world. I would cut off my left foot just to be able to see him enjoy an icecream cone or some macaroni & cheese. Anyway, I will definately check out p2p & the other links. Ronya - I might just take you up on that rant!!! And, I don't know what the biopsies will show or how we will figure out the culprits (RAST???), but I'm sure we will be exploring that soon enough. Patti - thanks for the uplifting post about your son with e.e. Sharon - not sure if he will be stuck with just formula or how many foods or even if there is a chance to outgrow. There are still so many unknowns on my part. I think allergies/and the immune system still stumps the Drs. Thanks again guys - glad your here & I always read up on/follow your little ones even if I don't reply a lot. Ellen
Aug 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
I would try not to worry too much yet, EE can only be dx'ed by biopsy, not visually. Wait till you get the results back to worry. I posted more in the other thread, to blueleopard
Aug 22, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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I'm so sorry that they found this all. you knew something was up though, but it's hard when your gut instinct is correct. Especially in these circumstances. I hope you can find some way to help your little man with this. Thinking of you! -Sarah
Check with your
doctor first!