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Posted by Debbie on August 01, 2003 at 20:25:36:
In Reply to: question for Debbie posted by Dana on August 01, 2003 at 16:14:04:
Hi Dana and everyone else too, Nice to meet you all as well. My story - short version for those of you who do not know - (I posted here regularily months ago and am just coming back)..... I have 2 children, ages 3 and 20 months. My 3 year old daughter has Down Syndrome. She is gorgeous and super smart!!! She was sick as an infant, a failure to thrive and 2 heart defects (a PDA and a VSD), temperature regulation problems and oxygen desats and apnea. My son is 20 months old. Shortly after birth he began vomiting and nonstop crying 18 out of 24 hours a day with no exaggeration. He was diagnosed with "reflux" at 6 weeks old, put on Zantac which did nothing. He continued to vomit, sometimes projectile, every time he ate or drank anything at all. I was so totally helpless for him. Food allergies were/are suspected but not the total cause of his problems, he was on Neocate until we switched him over to rice milk. After many, many tests, (numerous upper GI's, endoscopies, biopsies, rare absorption and metabolic disorder testing, cystic fybrosis and cerebral palsy testing, and CAT scans and MRI of the brain looking for tumors or problems with his vomiting center) it was deemed that he was "just" severe GERD and he would eventually "grow out of it". He was NG tube fed for 9 months (I learned this, did this, with the pump, checking for placement, administering meds, had a kangaroo pack, the whole 9 yards etc.), he still vomited, mostly when he was sleeping and we were to the point of being forced into having a nissen fundyplycation performed and a permanent g-tube (we had one g-tube but it got infected and I requested to go back to an NG even though it was a total nighmare with him pulling it out, etc), the operation was a last resort effort to stop the vomiting - he was 13 months old. He was non responsive to meds. - Reglan and Prilosec - which he still takes the Prilosec. Against my pediatricians advice and my GI and surgeons advice that he could end up growth stunted and suffer mental retardation from malnutrition and being clinically emaciated, my husband and I decided to wait a little longer. My guy stopped vomiting - almost like a miracle - when he was 15 months old. Since that time, he's put on 16 lbs and is doing very well. He is actually what they consider to be "advanced" in his developmental milestones. He's my second born joy in life. I just recently went back to work doing something I never thought I would think of - driving a school bus!!! Not nearly what I used to do before I had kids, but I take them both with me in the afternoon and they ride along in their carseats, thus alleviating the need for babysitting AND the best part, I can still be a SAHM for them until they go to full time school. One day I'd love to have another, but right now, I just want to enjoy the two I have and deal with just the "regular" childhood illnesses and issues for awhile, lol. Thanks for asking, now tell me your storie (s). Debbie : But now that I've scoped your name out -- what's your story? I'd love to hear more.... : Out of curiousity, have you thought of an ng or g tube if your son is still FTT? I love Dawson's g-tube for several reasons- one is that I don't have to worry much about dehydration (I just pump more fluid back in). And meds are a breeze to give. : I'd love to hear your story. : Dana
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She also has scattered Hirschprungs disease in her large intestine and she's neutropenic. I quit my job and became a SAHM after she was born, she's had PT, OT, Speech and Special Ed since she has been 6 weeks old and now she's in preschool doing superb, she's my firstborn pride and joy.
: I don't believe we've met. Sorry, but I usually glide by the posts that I don't feel are relevant to things in my family (re: your posts on hand foot and mouth disease).