My son and daughter have atypical cf. My daughter is doing great we do her treatments everyday, she is in school and loving it. My son is 2 and has been sick pretty much his whole life. His sweat test was negative, we did an ambrey test when he was about 8 months old and it came back that he has 7t 7t varient. He has been hospitalized 5 times and 2 picc lines. He has had a fever everyday since Aug 2010. He has tested positve for Staph, psuedomonous,ecoli. and stenotrophomonas multiphila. His white count is always high, it stays around 15,0000 when he is on ivs it comes down this last time after three weeks of tobramycin and ceftazidime it came down to 6,600and a week laterwas back up to 9,600. He is always stuffy and hoarse, the ent doesn't have any answers the meds he put him on didn't work he has had 3 ct scans of his siniuses since March of this year.The ID doctor thinks its viral. and the cf doctor is waiting for him to either get "sick" or culture something again so she can put him back in the hospital and do another bronc. ( had one in Aug 2010). I am fusterated and confused. My sister in law passed away in 2000 from Cf and this all scares me.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Questions about my son who has A Typical CF
- Thread starter cgerhardt
- Start date
My son and daughter have atypical cf. My daughter is doing great we do her treatments everyday, she is in school and loving it. My son is 2 and has been sick pretty much his whole life. His sweat test was negative, we did an ambrey test when he was about 8 months old and it came back that he has 7t 7t varient. He has been hospitalized 5 times and 2 picc lines. He has had a fever everyday since Aug 2010. He has tested positve for Staph, psuedomonous,ecoli. and stenotrophomonas multiphila. His white count is always high, it stays around 15,0000 when he is on ivs it comes down this last time after three weeks of tobramycin and ceftazidime it came down to 6,600and a week laterwas back up to 9,600.He is always stuffy and hoarse, the ent doesn't have any answers the meds he put him on didn't work he has had 3 ct scans of his siniuses since March of this year.The ID doctor thinks its viral. and the cf doctor is waiting for him to either get "sick" or culture something again so she can put him back in the hospital and do another bronc. ( had one in Aug 2010). I am fusterated and confused. My sister in law passed away in 2000 from Cf and this all scares me.
<BR>My son and daughter have atypical cf. My daughter is doing great we do her treatments everyday, she is in school and loving it. My son is 2 and has been sick pretty much his whole life. His sweat test was negative, we did an ambrey test when he was about 8 months old and it came back that he has 7t 7t varient. He has been hospitalized 5 times and 2 picc lines. He has had a fever everyday since Aug 2010. He has tested positve for Staph, psuedomonous,ecoli. and stenotrophomonas multiphila. His white count is always high, it stays around 15,0000 when he is on ivs it comes down this last time after three weeks of tobramycin and ceftazidime it came down to 6,600and a week laterwas back up to 9,600.He is always stuffy and hoarse, the ent doesn't have any answers the meds he put him on didn't work he has had 3 ct scans of his siniuses since March of this year.The ID doctor thinks its viral. and the cf doctor is waiting for him to either get "sick" or culture something again so she can put him back in the hospital and do another bronc. ( had one in Aug 2010). I am fusterated and confused. My sister in law passed away in 2000 from Cf and this all scares me.
A friend of mine's daughter had issues with her sinuses and had her first sinus surgery as well as removal of adenoids and tonsils at age 4. She said immediately afterwards she had a completely different child. Slept better, ate better. Wasn't a long term fix as she's due for surgery again in a few months.
DS' nose never runs and he had several sinus infections as a baby until his doctor prescribed a month long course of antibiotics to get rid of it once and for all. We'd use simply saline spray and the dreaded bulb syringe to try to get that junk out of his nose. When he turned 4 we were able to get him to do sinus rinses, which helped a lot.
DS has cultured steno. Malt as well -- his symptom was a dry, throat clearing cough that I thought was a nervous habit. He was prescribed septra, which it was sensitive to and the symptom went away. What have recent cultures shown? Are they prescribing medication accordingly?
DS' nose never runs and he had several sinus infections as a baby until his doctor prescribed a month long course of antibiotics to get rid of it once and for all. We'd use simply saline spray and the dreaded bulb syringe to try to get that junk out of his nose. When he turned 4 we were able to get him to do sinus rinses, which helped a lot.
DS has cultured steno. Malt as well -- his symptom was a dry, throat clearing cough that I thought was a nervous habit. He was prescribed septra, which it was sensitive to and the symptom went away. What have recent cultures shown? Are they prescribing medication accordingly?
A friend of mine's daughter had issues with her sinuses and had her first sinus surgery as well as removal of adenoids and tonsils at age 4. She said immediately afterwards she had a completely different child. Slept better, ate better. Wasn't a long term fix as she's due for surgery again in a few months.
DS' nose never runs and he had several sinus infections as a baby until his doctor prescribed a month long course of antibiotics to get rid of it once and for all. We'd use simply saline spray and the dreaded bulb syringe to try to get that junk out of his nose. When he turned 4 we were able to get him to do sinus rinses, which helped a lot.
DS has cultured steno. Malt as well -- his symptom was a dry, throat clearing cough that I thought was a nervous habit. He was prescribed septra, which it was sensitive to and the symptom went away. What have recent cultures shown? Are they prescribing medication accordingly?
DS' nose never runs and he had several sinus infections as a baby until his doctor prescribed a month long course of antibiotics to get rid of it once and for all. We'd use simply saline spray and the dreaded bulb syringe to try to get that junk out of his nose. When he turned 4 we were able to get him to do sinus rinses, which helped a lot.
DS has cultured steno. Malt as well -- his symptom was a dry, throat clearing cough that I thought was a nervous habit. He was prescribed septra, which it was sensitive to and the symptom went away. What have recent cultures shown? Are they prescribing medication accordingly?
A friend of mine's daughter had issues with her sinuses and had her first sinus surgery as well as removal of adenoids and tonsils at age 4. She said immediately afterwards she had a completely different child. Slept better, ate better. Wasn't a long term fix as she's due for surgery again in a few months.
<br />
<br />DS' nose never runs and he had several sinus infections as a baby until his doctor prescribed a month long course of antibiotics to get rid of it once and for all. We'd use simply saline spray and the dreaded bulb syringe to try to get that junk out of his nose. When he turned 4 we were able to get him to do sinus rinses, which helped a lot.
<br />
<br />DS has cultured steno. Malt as well -- his symptom was a dry, throat clearing cough that I thought was a nervous habit. He was prescribed septra, which it was sensitive to and the symptom went away. What have recent cultures shown? Are they prescribing medication accordingly?
<br />
<br />DS' nose never runs and he had several sinus infections as a baby until his doctor prescribed a month long course of antibiotics to get rid of it once and for all. We'd use simply saline spray and the dreaded bulb syringe to try to get that junk out of his nose. When he turned 4 we were able to get him to do sinus rinses, which helped a lot.
<br />
<br />DS has cultured steno. Malt as well -- his symptom was a dry, throat clearing cough that I thought was a nervous habit. He was prescribed septra, which it was sensitive to and the symptom went away. What have recent cultures shown? Are they prescribing medication accordingly?
4 weeks ago he tested ecoli and staph. He was on Septra for 3 weeks. Which had been on in March for the same length of time. He seems to do ok for a while but it seems like it stops working. He was in for a check up yesterday and culturegoing tod agian now we are just waiting to see what it says. We do the saline spray and suction as much as we can. The ENT doesn't seem to think he needs surgery, at this point my feeling is if it going to help him lets do it. I can't see things really getting any worse for him.
4 weeks ago he tested ecoli and staph. He was on Septra for 3 weeks. Which had been on in March for the same length of time. He seems to do ok for a while but it seems like it stops working. He was in for a check up yesterday and culturegoing tod agian now we are just waiting to see what it says. We do the saline spray and suction as much as we can. The ENT doesn't seem to think he needs surgery, at this point my feeling is if it going to help him lets do it. I can't see things really getting any worse for him.
4 weeks ago he tested ecoli and staph. He was on Septra for 3 weeks. Which had been on in March for the same length of time. He seems to do ok for a while but it seems like it stops working. He was in for a check up yesterday and culturegoing tod agian now we are just waiting to see what it says. We do the saline spray and suction as much as we can. The ENT doesn't seem to think he needs surgery, at this point my feeling is if it going to help him lets do it. I can't see things really getting any worse for him.
Hopefully the more recent culture results will show something. I know when DS would get sick as a baby, I'd wonder how the heck he could be sick being on keflex and tobi, but then it turned out he was culturing something completely different, which wasn't sensitive to those drugs.
Hopefully the more recent culture results will show something. I know when DS would get sick as a baby, I'd wonder how the heck he could be sick being on keflex and tobi, but then it turned out he was culturing something completely different, which wasn't sensitive to those drugs.
Hopefully the more recent culture results will show something. I know when DS would get sick as a baby, I'd wonder how the heck he could be sick being on keflex and tobi, but then it turned out he was culturing something completely different, which wasn't sensitive to those drugs.
D
DebbieS
Guest
I'm sorry if this seems like I'm going off on a tangent. Is your son on any mucus-inducing foods and drink? I found that when I was on dairy and wheat products, my congestion was horrible. When I was much younger, dairy products were a mainstay for me! I stay far FAR away from both now.
Also, does your son have any allergies? Has he undergone allergy testing? I'm allergic to various things and the first sign showing I'm sensitive to something was always increased congestion and then more symptoms would start piling up.
Don't know if any of this helps but I hope your son gets better very soon!!
Also, does your son have any allergies? Has he undergone allergy testing? I'm allergic to various things and the first sign showing I'm sensitive to something was always increased congestion and then more symptoms would start piling up.
Don't know if any of this helps but I hope your son gets better very soon!!
D
DebbieS
Guest
I'm sorry if this seems like I'm going off on a tangent. Is your son on any mucus-inducing foods and drink? I found that when I was on dairy and wheat products, my congestion was horrible. When I was much younger, dairy products were a mainstay for me! I stay far FAR away from both now.
Also, does your son have any allergies? Has he undergone allergy testing? I'm allergic to various things and the first sign showing I'm sensitive to something was always increased congestion and then more symptoms would start piling up.
Don't know if any of this helps but I hope your son gets better very soon!!
Also, does your son have any allergies? Has he undergone allergy testing? I'm allergic to various things and the first sign showing I'm sensitive to something was always increased congestion and then more symptoms would start piling up.
Don't know if any of this helps but I hope your son gets better very soon!!
D
DebbieS
Guest
I'm sorry if this seems like I'm going off on a tangent. Is your son on any mucus-inducing foods and drink? I found that when I was on dairy and wheat products, my congestion was horrible. When I was much younger, dairy products were a mainstay for me! I stay far FAR away from both now.
<br />
<br />Also, does your son have any allergies? Has he undergone allergy testing? I'm allergic to various things and the first sign showing I'm sensitive to something was always increased congestion and then more symptoms would start piling up.
<br />
<br />Don't know if any of this helps but I hope your son gets better very soon!!
<br />
<br />Also, does your son have any allergies? Has he undergone allergy testing? I'm allergic to various things and the first sign showing I'm sensitive to something was always increased congestion and then more symptoms would start piling up.
<br />
<br />Don't know if any of this helps but I hope your son gets better very soon!!
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cgerhardt</b></i>
My son and daughter have atypical cf. My son is 2 and has been sick pretty much his whole life. He has been hospitalized 5 times and 2 picc lines. He has had a fever everyday since Aug 2010. He has tested positve for Staph, psuedomonous,ecoli. and stenotrophomonas multiphila. His white count is always high, it stays around 15,0000 when he is on ivs it comes down this last time after three weeks of tobramycin and ceftazidime it came down to 6,600and a week laterwas back up to 9,600. <div></end quote></div> </div><div><br></div><div>This sounds like <u>typical</u> CF to me, not atypical......</div><div><br></div><div><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cgerhardt</b></i>He is always stuffy and hoarse, the ent doesn't have any answers the meds he put him on didn't work he has had 3 ct scans of his siniuses since March of this year.The ID doctor thinks its viral. and the cf doctor is waiting for him to either get "sick" or culture something again so she can put him back in the hospital and do another bronc. ( had one in Aug 2010). I am fusterated and confused. My sister in law passed away in 2000 from Cf and this all scares me.</end quote></div>
</div><div><br></div><div><br></div><div>Would love to help you, but not sure what your question is. Are you just venting? Or is there a specific ? we can help you with?</div><div><br></div><div>Debbie's suggestion about allergies is really smart. Definitely something to look in to for sure.</div><div><br></div><div>Take care. Hope your son feels better!</div>
My son and daughter have atypical cf. My son is 2 and has been sick pretty much his whole life. He has been hospitalized 5 times and 2 picc lines. He has had a fever everyday since Aug 2010. He has tested positve for Staph, psuedomonous,ecoli. and stenotrophomonas multiphila. His white count is always high, it stays around 15,0000 when he is on ivs it comes down this last time after three weeks of tobramycin and ceftazidime it came down to 6,600and a week laterwas back up to 9,600. <div></end quote></div> </div><div><br></div><div>This sounds like <u>typical</u> CF to me, not atypical......</div><div><br></div><div><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cgerhardt</b></i>He is always stuffy and hoarse, the ent doesn't have any answers the meds he put him on didn't work he has had 3 ct scans of his siniuses since March of this year.The ID doctor thinks its viral. and the cf doctor is waiting for him to either get "sick" or culture something again so she can put him back in the hospital and do another bronc. ( had one in Aug 2010). I am fusterated and confused. My sister in law passed away in 2000 from Cf and this all scares me.</end quote></div>
</div><div><br></div><div><br></div><div>Would love to help you, but not sure what your question is. Are you just venting? Or is there a specific ? we can help you with?</div><div><br></div><div>Debbie's suggestion about allergies is really smart. Definitely something to look in to for sure.</div><div><br></div><div>Take care. Hope your son feels better!</div>
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cgerhardt</b></i>
My son and daughter have atypical cf. My son is 2 and has been sick pretty much his whole life. He has been hospitalized 5 times and 2 picc lines. He has had a fever everyday since Aug 2010. He has tested positve for Staph, psuedomonous,ecoli. and stenotrophomonas multiphila. His white count is always high, it stays around 15,0000 when he is on ivs it comes down this last time after three weeks of tobramycin and ceftazidime it came down to 6,600and a week laterwas back up to 9,600.</end quote> <br>This sounds like <u>typical</u> CF to me, not atypical......<br><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cgerhardt</b></i>He is always stuffy and hoarse, the ent doesn't have any answers the meds he put him on didn't work he has had 3 ct scans of his siniuses since March of this year.The ID doctor thinks its viral. and the cf doctor is waiting for him to either get "sick" or culture something again so she can put him back in the hospital and do another bronc. ( had one in Aug 2010). I am fusterated and confused. My sister in law passed away in 2000 from Cf and this all scares me.</end quote>
<br><br>Would love to help you, but not sure what your question is. Are you just venting? Or is there a specific ? we can help you with?<br>Debbie's suggestion about allergies is really smart. Definitely something to look in to for sure.<br>Take care. Hope your son feels better!
My son and daughter have atypical cf. My son is 2 and has been sick pretty much his whole life. He has been hospitalized 5 times and 2 picc lines. He has had a fever everyday since Aug 2010. He has tested positve for Staph, psuedomonous,ecoli. and stenotrophomonas multiphila. His white count is always high, it stays around 15,0000 when he is on ivs it comes down this last time after three weeks of tobramycin and ceftazidime it came down to 6,600and a week laterwas back up to 9,600.</end quote> <br>This sounds like <u>typical</u> CF to me, not atypical......<br><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cgerhardt</b></i>He is always stuffy and hoarse, the ent doesn't have any answers the meds he put him on didn't work he has had 3 ct scans of his siniuses since March of this year.The ID doctor thinks its viral. and the cf doctor is waiting for him to either get "sick" or culture something again so she can put him back in the hospital and do another bronc. ( had one in Aug 2010). I am fusterated and confused. My sister in law passed away in 2000 from Cf and this all scares me.</end quote>
<br><br>Would love to help you, but not sure what your question is. Are you just venting? Or is there a specific ? we can help you with?<br>Debbie's suggestion about allergies is really smart. Definitely something to look in to for sure.<br>Take care. Hope your son feels better!
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cgerhardt</b></i>
My son and daughter have atypical cf. My son is 2 and has been sick pretty much his whole life. He has been hospitalized 5 times and 2 picc lines. He has had a fever everyday since Aug 2010. He has tested positve for Staph, psuedomonous,ecoli. and stenotrophomonas multiphila. His white count is always high, it stays around 15,0000 when he is on ivs it comes down this last time after three weeks of tobramycin and ceftazidime it came down to 6,600and a week laterwas back up to 9,600.</end quote> <br>This sounds like <u>typical</u> CF to me, not atypical......<br><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cgerhardt</b></i>He is always stuffy and hoarse, the ent doesn't have any answers the meds he put him on didn't work he has had 3 ct scans of his siniuses since March of this year.The ID doctor thinks its viral. and the cf doctor is waiting for him to either get "sick" or culture something again so she can put him back in the hospital and do another bronc. ( had one in Aug 2010). I am fusterated and confused. My sister in law passed away in 2000 from Cf and this all scares me.</end quote>
<br><br>Would love to help you, but not sure what your question is. Are you just venting? Or is there a specific ? we can help you with?<br>Debbie's suggestion about allergies is really smart. Definitely something to look in to for sure.<br>Take care. Hope your son feels better!
My son and daughter have atypical cf. My son is 2 and has been sick pretty much his whole life. He has been hospitalized 5 times and 2 picc lines. He has had a fever everyday since Aug 2010. He has tested positve for Staph, psuedomonous,ecoli. and stenotrophomonas multiphila. His white count is always high, it stays around 15,0000 when he is on ivs it comes down this last time after three weeks of tobramycin and ceftazidime it came down to 6,600and a week laterwas back up to 9,600.</end quote> <br>This sounds like <u>typical</u> CF to me, not atypical......<br><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cgerhardt</b></i>He is always stuffy and hoarse, the ent doesn't have any answers the meds he put him on didn't work he has had 3 ct scans of his siniuses since March of this year.The ID doctor thinks its viral. and the cf doctor is waiting for him to either get "sick" or culture something again so she can put him back in the hospital and do another bronc. ( had one in Aug 2010). I am fusterated and confused. My sister in law passed away in 2000 from Cf and this all scares me.</end quote>
<br><br>Would love to help you, but not sure what your question is. Are you just venting? Or is there a specific ? we can help you with?<br>Debbie's suggestion about allergies is really smart. Definitely something to look in to for sure.<br>Take care. Hope your son feels better!