Posted By Posting
Nov 18, 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.
Need advice ladies
I'm sitting here going bokers again over Jazzy's health. I feel like I'm missing something because i seem to write about her every 1 or 2 saying the same things.......She is having abdominal discomfort, gas and horrible smelling poops that seem to bother her.

Is this a reflux flare? Her Eso disorder? or a food allergy gone unnoticed? A food intolerance? Do I do an elinination diet? Can she survive on hardly any solids at this point? Could it be the rice milk that's bothering her? Do I go back to her Dr's who are trying to understand but missing the mark????

I don't know what to do.....

Nov 18, 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
I understand how you are feeling. I don't have any real advice just know that we are here for you. As far as if she can survive on very little solids the answer would be yes. A is surviving well on formula only. As long as she is taking in enough formula you should be fine. I have had to resort to making a higher calorie formula for Adriane.

I know that there is some GI bug that is going around here that is making their poo stink something horrible. Anytime A gets a touch of anything like that she is 10 times worse than other kids because her GI system is so sensitive.

I know how it feels to feel like you are helpless or not sure which way to go because you have tried so many things. You are a great mom and you will do what is right and best for her. I hope this gives you some support. -Amanda

Nov 18, 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.
It is so hard to figure out the puzzle. So hard on mom....you are doing such a great job. I would go back to the doc if she continues with the abdominal discomfort. If it is a virus maybe it will clear up in a few days.

I feel for you.

Nov 18, 2008
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
i am sending you hugs.... and "you're doing a great job" praise!

Jacky

Nov 18, 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.
Thanks ladies...I'm going nuts though!!
Nov 18, 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
Rotovirus??? Jedd got it even though he had all of his vacinations agianst it. He had LOTS and LOTS of smeely VERY smelly diapers. They were greenish, yellowish in color. And yes, it caused him gastric upset.
Nov 18, 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.
I feel for you...we finally decided to look for help in alternative medicine because none of the Dr's Lorenzo was seeing seemed to give sh*t about his issues since he is not in a crisis at the moment. From my experience and understanding, Chinese medicine has a tremendous body of knowledge regarding digestive issues. It might be worth just finding someone and going in for a consult to listen to what they have to say. We've used craniosacral therapy, Chinese medicine, acupuncture and homeopathy and have been pleased with both the level of interest and understanding, and the results from each.

And yes, solids seem to be totally optional at this age...Lorenzo still eats absolutely tiny amounts of solids, but nurses like a champ and has managed to stay slim but healthy as he races around his world burning up calories and making use of nutrients....

Nov 19, 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.
Sorry if I missed this before. My memory stinks these days. Did she undergo testing for immediate & delayed onset food allergies (scratch, RAST, patch)? We are working with the allergy dept. at CHOP, so that they can tell me what to do & what my son can/cannot eat. Some of the kids with eos disorders do well cutting out the top 8 allergenic foods & some have to go to only an elemental formula. It is hard when you don't know what is triggering their discomfort. We go for the patch testing Dec. 12th. I am keeping my fingers crossed he doesn't get sick again & have to cancel again. Ellen
Nov 19, 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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For us, Quinn complains of her stomach hurting all the time. She will just out of nowhere begin to start crying and crying and holding her stomach. She will tell me that her tummy hurts. It's really not something that we can fix. She does have digestive issues and we know that with this must come some kind of discomfort or pain from it. With Jazzy having reflux and her Eso disorder, i'm sure it is to be expected as well. I think as long as the pain is not constant... and i mean no breaks, no stop crying etc... or she isn't having bloody poop or vomit, your doctor probably won't say much.

I know how you are feeling though. My parents get on me all the time about Quinn. We are at a stand still right now though. I feel like she is doing excellent and so i try not to worry about the little things anymore. My parents always tell me that they need to figure out what is wrong with her. Not that i don't disagree but I always get the same response from most of her doctors. "Quinn is complex and so she is always going to have some sort of issue going on." I hope things get better for you guys.

Check with your
doctor first!