Help!!!

[Guest guest]

hi everyone, I hope this finds everyone well. I dont post often but am realy

in need of some help right now. is doing this gagging and choking thing

that he often turns blue from. he has been doing it for a while now and the

dr's have ran all sorts of tests and say that there is no answers for it and

that i am just gonna have to live with this ( I am not sure how to live with a

child that turns blue at any given time with out loosing my mind) any how

this is the run down was a 34 wkr he has Hirschprungs( dx at 2 wks

colostomy at 2 wks, pul through , and colostomy closure all done now ) severe

reflux( has had the nissen fundo)chronic anemia ( on iron), failure to

thrive,( g-button placed), hypotonia,delayed gastric emptying( on erythromycin

and zantac), delayed swallow, reduced lip closure , pooling in the pharaneal(

sp?) cavity, pooling in the valeucueal ( sp?) cavity, assperation ,

developmentally delayed, boarderline MR, milk protien allergy, and chronic

diahrea ( which they are taking him off of sucrose to see if it improves)

anyways I guess what I am looking for is someone whos child is similiar or if

anyone that knows a dr that might be able to help us. they have him on a apnea

monitor but they say that it may not pick it up becaseu the choking movements

trick the monitor into thinking that he is breathing. I am scared to death to

sleep. I dont know how much longer I can keep this up. I realy need to figure

out what to do. and the dr's arent being of much help they retested him for

reflux but it came out negative. they say that they can work on the choking

for while he is awake by working on his swallow problems but for while he is

sleeping they say there is just no solution other than having him on the

apnea monitor and hope it picks it up.I dont know what to do I keep thinking

that someone out there has to have some sort of clue. if any one has any ideas

please please write to me I am very desperate at this point!!! I would really

appreciate it!!! thank you very much in advance!!

angela and the munchkins