<br>My son has A typical cf we do neb treatments, vest, enzymes etc. He is 3 yrs old hospitalized 5 times for respitory infections and testing postive for different bacterias. The last year and a half he has had a fever everyday not always high somewhere between 99.7 and 100.5. He acts sick gets glassy eyes flushed in the face and fussy. In July the dr told us when he got "sick" the next time she would put him in the hospital do a bronc and see want his lungs look like. We are now going through his third sickness since than no hospital stays she keeps putting him on oral antibotics that are not working. In Oct. he tested postive for staph he was on bactrium for 3 weeks, when we went back he was still testing a plus 3 for staph she put him on cipro for 10 days and didn't retest. We are do for an appointment Dec. 28. He started with a cough and running nose ( which is thick and green like always) on Sat. I called yesterday because he isn't getting better. When the nurse called back the dr is putting him back on bactrim for 14 days. I am supposed to call tomorrow morning to let them know how he is. Sorry for the long post.My question is do I start him on medicine that didn't work 2 months ago ? I really don'tsee the point how can I get the dr to listen my husband and I. We are so fustrated. We have seen first how bad cf can be and we don't want that for our son. And his fevers can go as high as 104.5
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I need Advice please
- Thread starter cgerhardt
- Start date
<br>My son has A typical cf we do neb treatments, vest, enzymes etc. He is 3 yrs old hospitalized 5 times for respitory infections and testing postive for different bacterias. The last year and a half he has had a fever everyday not always high somewhere between 99.7 and 100.5. He acts sick gets glassy eyes flushed in the face and fussy. In July the dr told us when he got "sick" the next time she would put him in the hospital do a bronc and see want his lungs look like. We are now going through his third sickness since than no hospital stays she keeps putting him on oral antibotics that are not working. In Oct. he tested postive for staph he was on bactrium for 3 weeks, when we went back he was still testing a plus 3 for staph she put him on cipro for 10 days and didn't retest. We are do for an appointment Dec. 28. He started with a cough and running nose ( which is thick and green like always) on Sat. I called yesterday because he isn't getting better. When the nurse called back the dr is putting him back on bactrim for 14 days. I am supposed to call tomorrow morning to let them know how he is. Sorry for the long post.My question is do I start him on medicine that didn't work 2 months ago ? I really don'tsee the point how can I get the dr to listen my husband and I. We are so fustrated. We have seen first how bad cf can be and we don't want that for our son. And his fevers can go as high as 104.5
Well, his age complicates things a bit. What happens is that when they get a culture, they also test the bacteria to see what medications kill it. I'm sure his staph is sensitive to the medications he's being given. Usually when antibiotics don't work, they will do one of 2 things. 1) a long (months) course of oral antibiotics 2) IV antibiotics with a hospital stay. Again, his age probably complicates things.
Is there another doctor you can get an opinion from? Perhaps that's the most logical next step. I hope things work out for you.
Is there another doctor you can get an opinion from? Perhaps that's the most logical next step. I hope things work out for you.
Well, his age complicates things a bit. What happens is that when they get a culture, they also test the bacteria to see what medications kill it. I'm sure his staph is sensitive to the medications he's being given. Usually when antibiotics don't work, they will do one of 2 things. 1) a long (months) course of oral antibiotics 2) IV antibiotics with a hospital stay. Again, his age probably complicates things.
Is there another doctor you can get an opinion from? Perhaps that's the most logical next step. I hope things work out for you.
Is there another doctor you can get an opinion from? Perhaps that's the most logical next step. I hope things work out for you.
TreasureGoddess
Member
Have you thought of asking for an ENT doctor (ear, nose and throat) to see if there are sinus issues as well? Sometimes long infections in lungs combined with green goo in nasal discharge & fevers can come from sinus infections as well as the lung stuff.<br><br>I'd ask to redo cultures and follow up with the nurse/doctor staff on that. Ask what the levels are of each of his infections, mrsa, staff, etc and what the levels are now on the new cultures. Some of these bugs are hard to get rid of and often take 3-5 weeks of antibiotics. <br><br>BUT you are the parent and know when your kid isn't feeling sick and when the meds aren't working. Are you in a city that you could call another CF center for a 2nd opinion? Consider heading to a nearby town even if there's a few hours drive. Once you make the appointment, they can request your child's medical records and can have suggestions for things to try.<br><br>Good luck!! Stay persistent, ask those questions and if you don't agree, say so. The cultures measure the infection as well as which meds can work to fight these. Most likely the med you've used before just didn't kick it all the way.<br>
TreasureGoddess
Member
Have you thought of asking for an ENT doctor (ear, nose and throat) to see if there are sinus issues as well? Sometimes long infections in lungs combined with green goo in nasal discharge & fevers can come from sinus infections as well as the lung stuff.<br><br>I'd ask to redo cultures and follow up with the nurse/doctor staff on that. Ask what the levels are of each of his infections, mrsa, staff, etc and what the levels are now on the new cultures. Some of these bugs are hard to get rid of and often take 3-5 weeks of antibiotics. <br><br>BUT you are the parent and know when your kid isn't feeling sick and when the meds aren't working. Are you in a city that you could call another CF center for a 2nd opinion? Consider heading to a nearby town even if there's a few hours drive. Once you make the appointment, they can request your child's medical records and can have suggestions for things to try.<br><br>Good luck!! Stay persistent, ask those questions and if you don't agree, say so. The cultures measure the infection as well as which meds can work to fight these. Most likely the med you've used before just didn't kick it all the way.<br>
You didn't say where he is being seen. I would hope that he is being seen at an APPROVED CF CLINIC. You also didn't mention any mutations. Has he had a FULL CF SEQUENCE done?
I more than meet any and all criteria for a dx of CF, and have been dx at three CF CENTERS. I am still told by misinformed non CF Doctors that I have atypical CF. They are just expressing an opinion out of ignorance of CF. Usually based on my age and lung function.
I would not be too quick to accept the "atypical CF" dx and I would get son to a CF Center ASAP.
Good luck,
Bill
I more than meet any and all criteria for a dx of CF, and have been dx at three CF CENTERS. I am still told by misinformed non CF Doctors that I have atypical CF. They are just expressing an opinion out of ignorance of CF. Usually based on my age and lung function.
I would not be too quick to accept the "atypical CF" dx and I would get son to a CF Center ASAP.
Good luck,
Bill
You didn't say where he is being seen. I would hope that he is being seen at an APPROVED CF CLINIC. You also didn't mention any mutations. Has he had a FULL CF SEQUENCE done?
I more than meet any and all criteria for a dx of CF, and have been dx at three CF CENTERS. I am still told by misinformed non CF Doctors that I have atypical CF. They are just expressing an opinion out of ignorance of CF. Usually based on my age and lung function.
I would not be too quick to accept the "atypical CF" dx and I would get son to a CF Center ASAP.
Good luck,
Bill
I more than meet any and all criteria for a dx of CF, and have been dx at three CF CENTERS. I am still told by misinformed non CF Doctors that I have atypical CF. They are just expressing an opinion out of ignorance of CF. Usually based on my age and lung function.
I would not be too quick to accept the "atypical CF" dx and I would get son to a CF Center ASAP.
Good luck,
Bill
I am sorry to hear this is happening. I know for me and even when I was a child if orals did not work then in the hospital I went for a tune up. No fooling around. I was dx at 2 so I was going in the hospital at a young age too. The thing with CF is you can not let it get out of hand. Gotta nip it in the bud quick cause the sicker one gets the harder it is to get back to baseline if the person could even get back to baseline. I would FOR SURE switch docs since you are not getting what you need from this doctor. You should not have to be trying oral after oral with no success. It sounds like tune up time to me. Plus the fever is saying something is going on.<br><br>Switch docs. Find a new CF center or CF doc..... You should not have to beg for proper treatment or hospitalization. I know it is a pain to do this but will be worth it in the long run! When you find a great CF team and Doc it is such a pleasure and makes fighting this battle a bit easier!<br><br>Good luck! Stay strong! You know your child! Fight, Fight, Fight!<br><br><br>
I am sorry to hear this is happening. I know for me and even when I was a child if orals did not work then in the hospital I went for a tune up. No fooling around. I was dx at 2 so I was going in the hospital at a young age too. The thing with CF is you can not let it get out of hand. Gotta nip it in the bud quick cause the sicker one gets the harder it is to get back to baseline if the person could even get back to baseline. I would FOR SURE switch docs since you are not getting what you need from this doctor. You should not have to be trying oral after oral with no success. It sounds like tune up time to me. Plus the fever is saying something is going on.<br><br>Switch docs. Find a new CF center or CF doc..... You should not have to beg for proper treatment or hospitalization. I know it is a pain to do this but will be worth it in the long run! When you find a great CF team and Doc it is such a pleasure and makes fighting this battle a bit easier!<br><br>Good luck! Stay strong! You know your child! Fight, Fight, Fight!<br><br><br>
<br>Thank you everyone for the advice. We go go to Childerns Hospital, the testing he had done showed that he had the 7t 7t varient and thats all I know. Hehad an Ambrey test done in Aug 2009. The staph has shown up in throat cultures and in nose swabs. We have been to an ENT at Childerns and he didn't have much to offer. We have also seen the ID doctors there, agian they didn't offer much they kept telling us it was all viral. Our response was it couldn't be everydayfor a year, when no one else in the house gets sick, we have 2 other childern.Thank you again this gives us more questions to ask the doctors and thank you for reassuring me I am not over reacting.
<br>Thank you everyone for the advice. We go go to Childerns Hospital, the testing he had done showed that he had the 7t 7t varient and thats all I know. Hehad an Ambrey test done in Aug 2009. The staph has shown up in throat cultures and in nose swabs. We have been to an ENT at Childerns and he didn't have much to offer. We have also seen the ID doctors there, agian they didn't offer much they kept telling us it was all viral. Our response was it couldn't be everydayfor a year, when no one else in the house gets sick, we have 2 other childern.Thank you again this gives us more questions to ask the doctors and thank you for reassuring me I am not over reacting.
perhaps you should go for a consult at John Hopkins.
Mention to your group that you are going to do this though, that you are worried about how she is tracking, that you just want to get another's doctors care ideas in for consideration. That way the two clinics can share data openly without any hard feelings. Unfortunately ego's do get involved but if you handle it maturely and not a like a secretive beotch then any professional doctor should agree and commend you for wanting to be proactive.
Mention to your group that you are going to do this though, that you are worried about how she is tracking, that you just want to get another's doctors care ideas in for consideration. That way the two clinics can share data openly without any hard feelings. Unfortunately ego's do get involved but if you handle it maturely and not a like a secretive beotch then any professional doctor should agree and commend you for wanting to be proactive.
perhaps you should go for a consult at John Hopkins.
Mention to your group that you are going to do this though, that you are worried about how she is tracking, that you just want to get another's doctors care ideas in for consideration. That way the two clinics can share data openly without any hard feelings. Unfortunately ego's do get involved but if you handle it maturely and not a like a secretive beotch then any professional doctor should agree and commend you for wanting to be proactive.
Mention to your group that you are going to do this though, that you are worried about how she is tracking, that you just want to get another's doctors care ideas in for consideration. That way the two clinics can share data openly without any hard feelings. Unfortunately ego's do get involved but if you handle it maturely and not a like a secretive beotch then any professional doctor should agree and commend you for wanting to be proactive.