munkeesmama
10-06-2006, 11:55 AM
My daughtet was born at 27 weeks 2 days. She has had all the typical preemie related issues, ventilator, Cardiac arrest, rescusitated, ROP surgery, and on and on. My question though is regarding her reflux. She was diagnosed I believe when she was around 35 weeks or so gestational age and put on Zantac. She was diagnosed with a ph probe after having long, ongoing apnea and bradycardia. She was not discharged on any reflux meds as they felt it has resolved in the NICU. When she went in for her ROP surgery she was about 1 week adjusted age. 14 weeks real age. What was supposed to be a day surgery, overnight observation turned into another week in the nicu from long, and ongoing apneac and brady spells. They did yet another PH Probe which showed moderate-severe reflux. They started her on zantac once again and discharged her the following day after being "spell free" for 24 hours.
I continued to follow up with her pediatrician. The zantac appeared to have stopped working as she had lost a lb in a week from projectile vomiting and just not eating. She was started on prilosec 1.5 ml twice daily. a conservative amount Schedule for a pediatric g.i. consult and had an upper g.i. done. There was no relux shown durng the g.i. however i know that's not indicative. There was a "slight hangup" at the duadanum but nothing "remarkable". She continued to have blue spells and was admitted back into the pico for observation and more testing. She had ANOTHER ph probe and a sleep study. the ph probe once again showed extensive reflux some episodes lasting as long as 25 minutes. She was discharged.
Her pediatric g.i. had us change several formulas, going to hypoallergenic which showed no improvement so we changed back to regular. She has also been changed to prevacid solutabs and is on max dosage for age as well as cerafat 1ml/4 times daily and mylanta in between. She is no longer really having spells. Maybe one every few weeks and is gaining weight, however most of her eating is done at night during sleep feeds. She fights it during the day.
She continues to arch her back, scream/cry for the bulk of the day unless she is being held. even then she shimpers most times. She is waking up every 1-2 hours at night and then sleep feeds. She still projectile vomits on occasion. (we've tried thickening her formula, and ready made thickened formulas both which she refuses). My question is, is there a possibility that her sleep habits and crying, irritability may not be related to the reflux and she might just be a high needs baby? She has been this way since she has come home from the hospital, some days are better than others, but nights are pretty much the same. Her pediatric g.i. is not against the fundo and has said we are heading there, but feel as long as she is gaining that we should hold off. Whiile my stance is she is gaining because she eats all night long during dream feeds and appears to be in constant pain. How much is enough, and is there any test which can show the severity or any damage which is being done aside from the ph probe? We're at our wits end an don't want to pursue the surgery unless necessary but also don't want her miserable. Any insight would be greatly appreciated.
Thank you in advance!
I continued to follow up with her pediatrician. The zantac appeared to have stopped working as she had lost a lb in a week from projectile vomiting and just not eating. She was started on prilosec 1.5 ml twice daily. a conservative amount Schedule for a pediatric g.i. consult and had an upper g.i. done. There was no relux shown durng the g.i. however i know that's not indicative. There was a "slight hangup" at the duadanum but nothing "remarkable". She continued to have blue spells and was admitted back into the pico for observation and more testing. She had ANOTHER ph probe and a sleep study. the ph probe once again showed extensive reflux some episodes lasting as long as 25 minutes. She was discharged.
Her pediatric g.i. had us change several formulas, going to hypoallergenic which showed no improvement so we changed back to regular. She has also been changed to prevacid solutabs and is on max dosage for age as well as cerafat 1ml/4 times daily and mylanta in between. She is no longer really having spells. Maybe one every few weeks and is gaining weight, however most of her eating is done at night during sleep feeds. She fights it during the day.
She continues to arch her back, scream/cry for the bulk of the day unless she is being held. even then she shimpers most times. She is waking up every 1-2 hours at night and then sleep feeds. She still projectile vomits on occasion. (we've tried thickening her formula, and ready made thickened formulas both which she refuses). My question is, is there a possibility that her sleep habits and crying, irritability may not be related to the reflux and she might just be a high needs baby? She has been this way since she has come home from the hospital, some days are better than others, but nights are pretty much the same. Her pediatric g.i. is not against the fundo and has said we are heading there, but feel as long as she is gaining that we should hold off. Whiile my stance is she is gaining because she eats all night long during dream feeds and appears to be in constant pain. How much is enough, and is there any test which can show the severity or any damage which is being done aside from the ph probe? We're at our wits end an don't want to pursue the surgery unless necessary but also don't want her miserable. Any insight would be greatly appreciated.
Thank you in advance!