Guest guest Posted June 28, 2005 Report Share Posted June 28, 2005 Hi Everyone, Willie is almost 4 and a half. At 3 he was diagnosed by Dr Harbison w/ RSS. At first the perictin was great. Then maybe the Zantac helped. He was gaining well by his previous standards and closing that weight-for-height gap nicely. Last year at the convention, Dr HArbison thought he'd be ready for growth hormone by the end of the year. We started in April. Here's the bad part: he's no longer gaining. Until March he still took formula(bottle) at 30 cals/oz and we used it after meals, whenever the intake was down. It saved us as he's always refused any other milky drink (no Pediasure, no smoothies, no milkshakes). Then his new gastro ordered an Upper GI and put the barium in the formula. No more formula for Willie. Then the flu. Down 2.5 lbs total and has over 4 months gained it almost back but no more. Even w/ starting ght. So... we 're scheduling a gtube insertion. We'll see Dr H first but I think we're ready... 1) Have your doctors inserted the NG first? with what results?Our gastro wants to insert the NG and keep Willie in the hospital a couple days to watch him before the GTube is inserted then keep him another day or two to watch that. Is this pretty common? Necessary? 2)What pumps and formulas do you guys like? 3) Do the gtube feedings help keep the blood sugar more stable? Thanks for any info you can give me. That Dr H visit goes so fast. THE more we know going in the more ground we can cover, you know? Any info positive or negative would be so very appreciated. Thanks you , thank you! Kathy (Willie, RSS, 4, Periactin, Zantac, ght, 25 lbs, 91 cm and JAck, 6, non-RSS) Quote Link to comment Share on other sites More sharing options...
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