Posted By Posting
Dec 16, 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.
Eric just lost 4 more foods : (
We just returned from Children's Hosp. in Phila. where they did patch testing on Eric's back over the weekend. This test is different from scratch or RAST testing in that it looks for delayed reaction food allergies. This is a common tool when trying to get EE under control. So now, in addition to avoiding nuts, dairy, eggs, & soy, we have to avoid corn, rice, peaches, & potato. Honestly, I already suspected corn, because he would get this weird diaper rash after eating things like cornbread, BUT he loves rice and peaches. I feel so overwhelmed - it's getting impossible to feed him. We have to rescope/biopsy two months from now (after avoiding these new foods) & see what level of eosinophils are in his esophagus. I just hate this disorder & allergies in general. After nearly 3 years (by March 10), I have probably aged 20 years myself. Ellen
Dec 16, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
Ellen, I am so sorry to hear that there are more foods that have to be taken off of the "safe" list. I know that this is SOOO hard. I think we all assume when we have kids that we will be able to feed them. It's just a whole different world with gerd, food allergies and EE. Ella is having similar issues and will have her scope and biopsy on Thursday. I definitely understand how frustrating it all can be! I will be keeping you all in my thoughts and prayers. ((HUGS)) If you need to chat feel free to e-mail me and I can give you a call. RackleyFive@cox.net
Dec 16, 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.
oh! *hugs* is there any chance of him ever getting these foods back? i honestly don't know very much about EE or any of the E disorders... but i do know how it feels to loose foods. Are they doing any special formula with him? neocate has corn in it right?(trying to remember from engi, meggy can't do corn either) are they thinking about tube feeding? i am terrified this is what they may suggest for emily since she is loosing foods left and right and not being able to tolerate a lot of what she does eat. i know others do it and it is a godsend but i don't know if i could handle the knowing things really are that bad, kwim? I am glad you are back safe and sound and although the test results wern't what you were hoping for i hope that this will make him feel better *hugs*
Dec 16, 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.
Hugs. I am sorry more foods are off limits.

Hang in there. Hope you can find some new favorite foods.

Dec 16, 2008
mommy2max&lucy
Patti, mom to Max (3/04) with EE and chronic sinus issues; Lucy (6/07) with reflux
Hi Ellen! I am at work so I can't write much, but I am so sorry to hear that Eric lost these foods. Is Eric showing many symptoms now? Just wondering if going on a complete elimination diet might be a better option to get him completely healed and then starting over. Do you shop at Wegmans or Whole Foods? You might be able to come up with some good ideas for snacks, etc. Also, check out www.allergygrocer.com. It has a ton of snacks for allergy kiddos. Try not to get too discouraged...patch testing is only accurate in about 50% of cases...if the scope is clear, maybe you can try adding some of Eric's favorite foods back in.
Dec 16, 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 sorry Ellen, I know it must be getting so hard to find things for him. Just pray that he outgrows his allergies :) I've decided that Mags is allergic to tomatoes and in my research, I found out that if you're allergic to tomatoes-you're prob allergic to potatoes too. Since he's allergic to potatoes, does that mean he's prob allergic to tomatoes? What I read said the plants are both in the same family.
Dec 16, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
Ellen, I'm so sorry about the foods. I know how hard it can be to take food away or to be told that your lo can't have those foods in the future. I agree with max and Lucy's mom about the elimination diet. After we took A off of everything she felt better her attitude was better it affected all aspects of her life. We did that for about 2 months and then started her on one food every two weeks. It was the easiest way. Slow going but at least we know what she can and can't have. I hope you get some good news from the test. -Amanda
Dec 16, 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)) I'm so sorry, Ellen. You guys have been through so much already. I can't imagine the frustration you must feel. I wish there were more I could do, but all I have to offer is my virtual hugs and moral support....
Dec 17, 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 so sorry...we are battling EC and I find that there is something new to contend with on a daily basis.....hang in there..HUGS
Dec 17, 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 am really down in the dumps. I feel bad for people who suffer from depression due to brain chemistry. It s*cks! I'm even having trouble sleeping. I had to chuck 3/4 of his already restricted food yesterday. Walked around Acme in a daze. Can man survive on green beans and turkey alone? And, will he eventually develop an allergy to that because of over eating them? Anyway, thanks to all for your much needed support. Trust me, all the people I know that have perfectly (or nearly perfectly) healthy children have no idea what this is like. Jen - I pray all goes well with Ella's scope & that they don't find too many eos. Emibug - Eric currently takes two bottles of Neocate now. They didn't tell us to switch because of the corn. It must be broken down. Yes, they mention that it could come to tube feeding. That scares the daylights out of me. Honestly, I couldn't do it. If it were for 6 mths. to a year (maybe). But, because this disease is never outgrown, I just wouldn't do it. Patti & Amanda - I think the elimination diet may be a good idea too. He had such horrible treatment (Drs.) in the beginning. He actually had months to maybe a year on formulas he was allergic to & months of really bad diarehea. I can only imagine the damage done to his gut. Healing it up sounds wise. Oh, unfortunately we only have Acme & Shop-Rite around here, but I'll look into the link mentioned. Maggiemom - not sure about tomatoes but I am afraid to try them anyway. His aunt was allergic & citrus can cause issues. B-girl/lorenzomoma - I know you both can relate, thanks again for the support. Happy Holidays to Everyone. If I can get my hands on some Prozac or something, maybe I'll cheer up some for my daughters' sake!! Ellen
Dec 18, 2008
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
I am so sorry to hear this Ellen. :( Huge hugs to you and little Eric
Check with your
doctor first!