Aiden

Many questions….I have not posted in a while bcuz things have been crazy since Aiden’s Admission to the NICU. He spent 13days there(been home a month) and is not any better than before we took him in except for a new diagnosis of dyspahgia (difficlutly with his sucking/swallowing) and hypotonia(not sure yet of the cause). He works with OT now 2x/week to build up his endurance to eat and over all strength. His problem was 2 fold: not only does he have a feeding aversion from the reflux but he did/does not have the endurance to finish eating even when he wants to eat (on that rare occasion). We are at the point of possibe feeding tube(weight gain is stopping) and if he gets it(the gavage tube) the OT people are afraid he will lose what little oral skills he does have….DOes anyone else have a problem like this? I would still try and feed him every feed, but when he just screams and won’t eat then we would have the option to get food in him that way. But would start to lose what little suck he does have. UGH!!!! I am fighting an uphill battle and losing!!!!!

ALso how do you get your kids to take their prevacid? We have been putting Aiden’s prevacid compound into a nipple and getting him to suck it down but if he wakes up during it he stops sucking…THne we have to finish the dose with a syringe which he spits out most of. We have tried the solutabs (which actaully taste pretty good) but he was sptiing those out too. We would find little orange powders in his neck all day long and those did not fit thru any nipple that he could suck (very weak suck). If wwe put in in a y nipple or something like that he just got drowneded and could not handle all the liquid in his mouth. SO not only is he not on enough prevacid (16mg/day) what is is on he does not get all of alot of times. We have tried 3 diff GI’s and 2 other docs and no one will up his dose. I have given all of them the marci-kids stuff and all of them looked at it and looked at the studies and said they were not “impressed ” by the studies. We had to fight tooth and nail to get our insurance to cover the doctor switches and the prevacid (not on formulary). We can’t afford to keep paying out of pocket to see other people when the insurnace says no…ANyway that was not a question just a vent…the questions are how do you get the kids to actually swallow the meds and anyone else out there with Gavage tubes and/or oral/motor dysfunction?

Thank you… you all have been a life saver. I have not posted too much as I am in the bowels of reflux right now but I am reading every day…