Guest guest Posted June 19, 2003 Report Share Posted June 19, 2003 I have two grandchildren with CF, Wade 3.5 yrs. and 3 mos. Wade has just cultured PA non-mucoidal. Our CF doc at CHOP, in Phila. has prescribed Colistin (neb) and Cipro. We are all pretty upset and are looking for some encouraging words of experience from our CF family. We will be grateful for any responses of success, caution, etc. and whether you think the meds are appropriate/ agressive enough. Thanks and God Bless. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2003 Report Share Posted June 19, 2003 Sorry to hear this as well BUT-You have a great team there so, smile on them as well. They are doing the very best & all will work out for them. That is one of the best Children's hospital & CF Centers in the USA. They have been awarded that several years by their peers as well .Those wee ones are lucky to have such a concerned grandmom too. We , most all have been in that " worrying " position too, It will get easier & you will feel more sure that they will be alright & with the medical good care & such great FAMILY love too . -----A super combination Prayers for each team in these precious young ones lives~~~~~~~~ LOVE & HUGS, grandmoMBEV First PA Diagnosis I have two grandchildren with CF, Wade 3.5 yrs. and 3 mos. Wade has just cultured PA non-mucoidal. Our CF doc at CHOP, in Phila. has prescribed Colistin (neb) and Cipro. We are all pretty upset and are looking for some encouraging words of experience from our CF family. We will be grateful for any responses of success, caution, etc. and whether you think the meds are appropriate/ agressive enough. Thanks and God Bless. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2003 Report Share Posted June 19, 2003 My daughter was 2-3 when first dx with PA. We did 3 months on Cipro. and Colistin x4 times = 12 months and it has never come back after that year of treatment. She is now nearly 6. (Australia) First PA Diagnosis I have two grandchildren with CF, Wade 3.5 yrs. and 3 mos. Wade has just cultured PA non-mucoidal. Our CF doc at CHOP, in Phila. has prescribed Colistin (neb) and Cipro. We are all pretty upset and are looking for some encouraging words of experience from our CF family. We will be grateful for any responses of success, caution, etc. and whether you think the meds are appropriate/ agressive enough. Thanks and God Bless. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2003 Report Share Posted June 20, 2003 Coliston has been our miracle drug. Traci is like a new child since being on Coliston. She is on 1 month then off 1 month. She mentioned just this morning that she feels better when she is on Coliston and she is only 8. Quote Link to comment Share on other sites More sharing options...
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