Posted By Posting
Oct 02, 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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Elyse update
Well, today I am feeling like I have my little girl back! The GI's nurse finally called back and was no help at all. She gave me a lot of tips that we have already tried and told me I should not offer her water or juice unless she drinks enough formula first. We offer formula all day long (and other milk like drinks) and she won't drink it, so I asked am I supposed to not let her have any fluids at all then?? She didn't really say anything, just gave me the dehydration drill...you know, all the symptoms.

She did ask if she had a fever and she did for 2 days, very low grade, and I assumed it was just teething but she said that can be a sign of dehydration. On Saturday and Sunday elyse also did a lot of laying around which is atypical for her but i again chalked it up to teething/fever. Maybe I was wrong, maybe I was right, who knows. I guess the important thing is that we seem to be past the hurdle again, she has had about 10 ounces of fluids today and it is 1:30. That's more than she has had any day in the past week so I am thrilled! She also ate an entire cheese stick and some buttered toast, and this morning a quarter of a banana (which she has refused for about a month now) and a couple bites of egg. I am going to the grocery store when she wakes up because I want to try coys mom's bread recipe!

Oct 02, 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.
great update!!!!!!! WAHOO!!!
Oct 02, 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 am glad she is doing better ((hugs))
Oct 02, 2008
katiesmommy
Tracey, mom to Katie. Diagnosed with reflux at 3 weeks and put on Zantac. At 8 months old she was removed from Zantac as it was giving her migraines, currently on Prevacid. Switched to Elecare since she is not gaining weight; trialing solids after being off for a month. Geneticist said reason she isn't gaining weight is she is stubborn. Upcoming appts.: Neurologist for developmental delay and EGD scheduled for September. She is one funny baby!
Whoo Hoo!!
Oct 02, 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
Forgot to add that the nurse said it can't be reflux causing the issues bc she is not throwing up or spitting up. i told her she is swallowing a lot and hiccuping and that maybe it is silent reflux but it seemed like she didn't know what the heck I was talking about. She just kept repeating "well if she isn't throwing up..." Weird.
Oct 02, 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.... :(
Progress!!! Hooray!!!
Oct 02, 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.
So happy for your progress.
Oct 02, 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.
You go Elyse!!! As for that nurse -- I don't know what is up with the "can't be reflux because they aren't puking" thing. We've heard that before, and I just want to scream when I hear it. I meant, for cryin out loud, how many adults with reflux puke? Most do not, so why should it be assumed that all children are going to puke if they have reflux. Ugh. I get so tired of educating the people who are supposed to be educating us....
Oct 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.
glad she ate better. i hope she loves the bread.
Check with your
doctor first!