Posted By Posting
Oct 01, 2009
wenbomama
Wenbo
Thank you ladies for great support. Especially to blueleopard, you are so knowlegable with EE. I am sorry that Eric has EE, really hope he will pass his test and have five more new food to eat. So four days after we stopped giving Wenbo probiotics, he still has blood in his stool (my husband just told me), he was only on culturelle probiotics for two days. His GI finally called me back 28 hours after I called him twice, we scheduled a scope on Oct23, that's the earliest time he can do, it's funny that I have been trying to avoid a scope all these time, but once I have decided to do it, the waiting time seems to be forever. The simple food I have been giving him is cooked apple, cooked pear or banana mixed with avacado, till last week, I still gave him earth's best creamy chicken with carrot and brown rice in it, he had more than three jars initially, he seemed to be OK after eating it, however, after I saw blood showing up in his stool again, I stopped giving him that too. He also easliy chokes on food with a little bit texture, he gags even when he is alseep, prevacid helps some, but not completely. His GI told me to give him periactin in the morning instead of right before bed, we are still ajusting the dose, thanks everyone for great advice on peiactin. I just finished reading Life on Reflux RollerCoaster, it truly breaks my heart to know how much these innocent babies have to go through, it also makes me worry to sick to know how bad things can get.
Oct 01, 2009
wenbomama
Also, blueleopard, since you mention E colitis, I was wondering what kind of scope my GI is going to do, from top or from bottom? Is it possible that he could have both EE and E colitis? We have a regular appt with him next Monday, I hope he could tell me in more details about his plan. My GI is from MGH, do you think we will have better treatment at Boston children's hospital?
Oct 01, 2009
jeddsmommy
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
Boston Children's is an AWESOME hospital I've heard. when Jedd went out of town for testing that could not be performed here in VA we were tossed up between Nationwide Children's in Columbus Ohio and Boston Children's in Boston. BOTH places are world known for their motility clinic and that's why we were getting testing. We went with Nationwide just because we have family about 1.25 hours away from their campus versus about 2.5 from Boston.

I have heard nothing but good things about their GI program.

Oct 01, 2009
mommato3
I don't know much about MGH but I know Boston's is THE best hospital for GI and their motility clinic like Jeddsmommy said is world renown. That is where we will take Holden if he doesn't start to outgrow any of his motility issues and GERD. It is a long way for us so we go to Cincinnatti Children's which also has an awesome GI department and an aerodigestive team that we see. Boston is a very busy hospital though. I might would go ahead with your scope and see what happens there but if EE turns up or you feel uneasy with your GI and that you still have some unanswered questions feel very blessed to live close by Boston.
Oct 02, 2009
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.
Sorry you are going thru this...HUGS My Jazzy has E colitis. They scoped from both ends with biopsies. If you have any questions I'd be happy to help. After all the med trials etc... the best thing we ever did was remove as much foods from her diet as possible. We did this for 6 months and it made a huge difference. I have to go feed my baby, but I'll be back...
Oct 02, 2009
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.
Good luck on the 23rd. As far as I know, they would most likely want to do an endoscope & colonospopy (both ends!). As far as having EE & EC, it's probably possible, but I seem to see EC and EG together more - lower end of the GI tract. Just remember if you cut out too many foods, it may throw off the results. But, I'm not sure if you would continue with blood in the stool (not good) - best to call the Dr. on that. As far as local Drs. vs. hospital, I can only say that in OUR situation it was best to go to the experts. Let us know how he does & hang in there. El
Oct 02, 2009
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 meant to say do not change his diet until after testing!!!! THANKS Ellen!!!
Check with your
doctor first!