Non-CF question

C

clawson5104

New member
hi everybody, I have a friend w/ 11mos son. who has a cleft on his soft palate. she is having a hard time getting straight answers from docs, and i told her my CF friends may know some answers,,, I'd give it a try.......so here it goes. her son has a cleft on his soft palate ONLY. not cleft lip, not hard palate....soft palate. he is suck a bottle, and eats pretty good. not underweight or anything. he has only had 2 ear infections and a mild sinus infection. he sees a team of docs, and they are giving her different answers on his after surgery care. she is told he will have to wear arm restraints for 3 weeks, can only "drip" formula into his mouth for 3 weeks, and must have tubes in his ears too, from one doc. another is telling her, arm restraints first 2 days, drip for 2 days, and tubes only if he would have ALOT of ear infections or hearing problems. pediatrician says ears show no fluid, he will have to check out what the deal is with tubes. and the rest he knows nothing about. if it is a hard palate surgery she could understand,,,,,these kids typically cannot suck. but her ds is having soft palate.


DO ANY OF YOU HAVE EXPERIENCE OR KNOW SOMEBODY WITH ANSWERS????


It would GREATLY be appreciated!!! thanks
 
C

clawson5104

New member
hi everybody, I have a friend w/ 11mos son. who has a cleft on his soft palate. she is having a hard time getting straight answers from docs, and i told her my CF friends may know some answers,,, I'd give it a try.......so here it goes. her son has a cleft on his soft palate ONLY. not cleft lip, not hard palate....soft palate. he is suck a bottle, and eats pretty good. not underweight or anything. he has only had 2 ear infections and a mild sinus infection. he sees a team of docs, and they are giving her different answers on his after surgery care. she is told he will have to wear arm restraints for 3 weeks, can only "drip" formula into his mouth for 3 weeks, and must have tubes in his ears too, from one doc. another is telling her, arm restraints first 2 days, drip for 2 days, and tubes only if he would have ALOT of ear infections or hearing problems. pediatrician says ears show no fluid, he will have to check out what the deal is with tubes. and the rest he knows nothing about. if it is a hard palate surgery she could understand,,,,,these kids typically cannot suck. but her ds is having soft palate.


DO ANY OF YOU HAVE EXPERIENCE OR KNOW SOMEBODY WITH ANSWERS????


It would GREATLY be appreciated!!! thanks
 
C

clawson5104

New member
hi everybody, I have a friend w/ 11mos son. who has a cleft on his soft palate. she is having a hard time getting straight answers from docs, and i told her my CF friends may know some answers,,, I'd give it a try.......so here it goes. her son has a cleft on his soft palate ONLY. not cleft lip, not hard palate....soft palate. he is suck a bottle, and eats pretty good. not underweight or anything. he has only had 2 ear infections and a mild sinus infection. he sees a team of docs, and they are giving her different answers on his after surgery care. she is told he will have to wear arm restraints for 3 weeks, can only "drip" formula into his mouth for 3 weeks, and must have tubes in his ears too, from one doc. another is telling her, arm restraints first 2 days, drip for 2 days, and tubes only if he would have ALOT of ear infections or hearing problems. pediatrician says ears show no fluid, he will have to check out what the deal is with tubes. and the rest he knows nothing about. if it is a hard palate surgery she could understand,,,,,these kids typically cannot suck. but her ds is having soft palate.


DO ANY OF YOU HAVE EXPERIENCE OR KNOW SOMEBODY WITH ANSWERS????


It would GREATLY be appreciated!!! thanks
 
C

clawson5104

New member
hi everybody, I have a friend w/ 11mos son. who has a cleft on his soft palate. she is having a hard time getting straight answers from docs, and i told her my CF friends may know some answers,,, I'd give it a try.......so here it goes. her son has a cleft on his soft palate ONLY. not cleft lip, not hard palate....soft palate. he is suck a bottle, and eats pretty good. not underweight or anything. he has only had 2 ear infections and a mild sinus infection. he sees a team of docs, and they are giving her different answers on his after surgery care. she is told he will have to wear arm restraints for 3 weeks, can only "drip" formula into his mouth for 3 weeks, and must have tubes in his ears too, from one doc. another is telling her, arm restraints first 2 days, drip for 2 days, and tubes only if he would have ALOT of ear infections or hearing problems. pediatrician says ears show no fluid, he will have to check out what the deal is with tubes. and the rest he knows nothing about. if it is a hard palate surgery she could understand,,,,,these kids typically cannot suck. but her ds is having soft palate.


DO ANY OF YOU HAVE EXPERIENCE OR KNOW SOMEBODY WITH ANSWERS????


It would GREATLY be appreciated!!! thanks
 
C

clawson5104

New member
hi everybody, I have a friend w/ 11mos son. who has a cleft on his soft palate. she is having a hard time getting straight answers from docs, and i told her my CF friends may know some answers,,, I'd give it a try.......so here it goes. her son has a cleft on his soft palate ONLY. not cleft lip, not hard palate....soft palate. he is suck a bottle, and eats pretty good. not underweight or anything. he has only had 2 ear infections and a mild sinus infection. he sees a team of docs, and they are giving her different answers on his after surgery care. she is told he will have to wear arm restraints for 3 weeks, can only "drip" formula into his mouth for 3 weeks, and must have tubes in his ears too, from one doc. another is telling her, arm restraints first 2 days, drip for 2 days, and tubes only if he would have ALOT of ear infections or hearing problems. pediatrician says ears show no fluid, he will have to check out what the deal is with tubes. and the rest he knows nothing about. if it is a hard palate surgery she could understand,,,,,these kids typically cannot suck. but her ds is having soft palate.


DO ANY OF YOU HAVE EXPERIENCE OR KNOW SOMEBODY WITH ANSWERS????


It would GREATLY be appreciated!!! thanks
 
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