13 month old, diagnosed a year ago, now first cold

websterhome

New member
Hello,
My daugter is now 13 months old, she was dx'd with CF (GF551D & N1303K)at 6 days and has stayed incredibly healthy until 2 weeks ago. We've been crazy about keeping her out of public places, away from sick people & using hand sanitizer all the time... But, somehow a bug struck our house. The sequence of events has been awful... she went from teething to pink eye to 12 month immunizations to a cough then fever then significant congestion & a worsened cough... At the start of the pink eye & cough, her CF doc put her on Keflex because the only thing her quarterly throat cultures have been positive for is staph aureus. She stayed on Keflex for 11 days with no improvement but had a follow up throat swab that came back totally clean. At day 12 with continuing illness, they switched her to Septra, she had a fever of 101.4 yesterday but then today no fever (has had 2 1/2 days of Septra so far). Her cough seems worse, but I think it's just because all of the gunk in her is traveling south - she's not congested in her nose anymore, but her cough is super wet sounding. I wonder about H1N1 & I second guess everything... to top it off, I was diagnosed myself today with Atypical Pneumonia and started on Zithromax. My husband has also been sick (a tad more mild than I've been), so his doc put him on Zithromax starting today just to be safe. With treating Lucy, we've increased her CPT so that I do it multiple times a day/night (~4x/24hrs) but she's a fiesty toddler so it's difficult to do it perfectly. She has had coughing fits that have caused her to vomit 4 times since she's been sick, once tonight. I'll do absolutely anything to keep her out of the hospital. I work as a RN myself in the Neonatal ICU & I know how much of germ central the hospital is... So, what I'd love is any advice/opinion from all of you knowledgable CF parents & patients out there! Thanks so much! I love how supportive the CF community is!
 

websterhome

New member
Hello,
My daugter is now 13 months old, she was dx'd with CF (GF551D & N1303K)at 6 days and has stayed incredibly healthy until 2 weeks ago. We've been crazy about keeping her out of public places, away from sick people & using hand sanitizer all the time... But, somehow a bug struck our house. The sequence of events has been awful... she went from teething to pink eye to 12 month immunizations to a cough then fever then significant congestion & a worsened cough... At the start of the pink eye & cough, her CF doc put her on Keflex because the only thing her quarterly throat cultures have been positive for is staph aureus. She stayed on Keflex for 11 days with no improvement but had a follow up throat swab that came back totally clean. At day 12 with continuing illness, they switched her to Septra, she had a fever of 101.4 yesterday but then today no fever (has had 2 1/2 days of Septra so far). Her cough seems worse, but I think it's just because all of the gunk in her is traveling south - she's not congested in her nose anymore, but her cough is super wet sounding. I wonder about H1N1 & I second guess everything... to top it off, I was diagnosed myself today with Atypical Pneumonia and started on Zithromax. My husband has also been sick (a tad more mild than I've been), so his doc put him on Zithromax starting today just to be safe. With treating Lucy, we've increased her CPT so that I do it multiple times a day/night (~4x/24hrs) but she's a fiesty toddler so it's difficult to do it perfectly. She has had coughing fits that have caused her to vomit 4 times since she's been sick, once tonight. I'll do absolutely anything to keep her out of the hospital. I work as a RN myself in the Neonatal ICU & I know how much of germ central the hospital is... So, what I'd love is any advice/opinion from all of you knowledgable CF parents & patients out there! Thanks so much! I love how supportive the CF community is!
 

websterhome

New member
Hello,
My daugter is now 13 months old, she was dx'd with CF (GF551D & N1303K)at 6 days and has stayed incredibly healthy until 2 weeks ago. We've been crazy about keeping her out of public places, away from sick people & using hand sanitizer all the time... But, somehow a bug struck our house. The sequence of events has been awful... she went from teething to pink eye to 12 month immunizations to a cough then fever then significant congestion & a worsened cough... At the start of the pink eye & cough, her CF doc put her on Keflex because the only thing her quarterly throat cultures have been positive for is staph aureus. She stayed on Keflex for 11 days with no improvement but had a follow up throat swab that came back totally clean. At day 12 with continuing illness, they switched her to Septra, she had a fever of 101.4 yesterday but then today no fever (has had 2 1/2 days of Septra so far). Her cough seems worse, but I think it's just because all of the gunk in her is traveling south - she's not congested in her nose anymore, but her cough is super wet sounding. I wonder about H1N1 & I second guess everything... to top it off, I was diagnosed myself today with Atypical Pneumonia and started on Zithromax. My husband has also been sick (a tad more mild than I've been), so his doc put him on Zithromax starting today just to be safe. With treating Lucy, we've increased her CPT so that I do it multiple times a day/night (~4x/24hrs) but she's a fiesty toddler so it's difficult to do it perfectly. She has had coughing fits that have caused her to vomit 4 times since she's been sick, once tonight. I'll do absolutely anything to keep her out of the hospital. I work as a RN myself in the Neonatal ICU & I know how much of germ central the hospital is... So, what I'd love is any advice/opinion from all of you knowledgable CF parents & patients out there! Thanks so much! I love how supportive the CF community is!
 

websterhome

New member
Hello,
My daugter is now 13 months old, she was dx'd with CF (GF551D & N1303K)at 6 days and has stayed incredibly healthy until 2 weeks ago. We've been crazy about keeping her out of public places, away from sick people & using hand sanitizer all the time... But, somehow a bug struck our house. The sequence of events has been awful... she went from teething to pink eye to 12 month immunizations to a cough then fever then significant congestion & a worsened cough... At the start of the pink eye & cough, her CF doc put her on Keflex because the only thing her quarterly throat cultures have been positive for is staph aureus. She stayed on Keflex for 11 days with no improvement but had a follow up throat swab that came back totally clean. At day 12 with continuing illness, they switched her to Septra, she had a fever of 101.4 yesterday but then today no fever (has had 2 1/2 days of Septra so far). Her cough seems worse, but I think it's just because all of the gunk in her is traveling south - she's not congested in her nose anymore, but her cough is super wet sounding. I wonder about H1N1 & I second guess everything... to top it off, I was diagnosed myself today with Atypical Pneumonia and started on Zithromax. My husband has also been sick (a tad more mild than I've been), so his doc put him on Zithromax starting today just to be safe. With treating Lucy, we've increased her CPT so that I do it multiple times a day/night (~4x/24hrs) but she's a fiesty toddler so it's difficult to do it perfectly. She has had coughing fits that have caused her to vomit 4 times since she's been sick, once tonight. I'll do absolutely anything to keep her out of the hospital. I work as a RN myself in the Neonatal ICU & I know how much of germ central the hospital is... So, what I'd love is any advice/opinion from all of you knowledgable CF parents & patients out there! Thanks so much! I love how supportive the CF community is!
 

websterhome

New member
Hello,
<br />My daugter is now 13 months old, she was dx'd with CF (GF551D & N1303K)at 6 days and has stayed incredibly healthy until 2 weeks ago. We've been crazy about keeping her out of public places, away from sick people & using hand sanitizer all the time... But, somehow a bug struck our house. The sequence of events has been awful... she went from teething to pink eye to 12 month immunizations to a cough then fever then significant congestion & a worsened cough... At the start of the pink eye & cough, her CF doc put her on Keflex because the only thing her quarterly throat cultures have been positive for is staph aureus. She stayed on Keflex for 11 days with no improvement but had a follow up throat swab that came back totally clean. At day 12 with continuing illness, they switched her to Septra, she had a fever of 101.4 yesterday but then today no fever (has had 2 1/2 days of Septra so far). Her cough seems worse, but I think it's just because all of the gunk in her is traveling south - she's not congested in her nose anymore, but her cough is super wet sounding. I wonder about H1N1 & I second guess everything... to top it off, I was diagnosed myself today with Atypical Pneumonia and started on Zithromax. My husband has also been sick (a tad more mild than I've been), so his doc put him on Zithromax starting today just to be safe. With treating Lucy, we've increased her CPT so that I do it multiple times a day/night (~4x/24hrs) but she's a fiesty toddler so it's difficult to do it perfectly. She has had coughing fits that have caused her to vomit 4 times since she's been sick, once tonight. I'll do absolutely anything to keep her out of the hospital. I work as a RN myself in the Neonatal ICU & I know how much of germ central the hospital is... So, what I'd love is any advice/opinion from all of you knowledgable CF parents & patients out there! Thanks so much! I love how supportive the CF community is!
 

Ratatosk

Administrator
Staff member
DS had similar issues when he was a baby. He was already ON keflex and developed a harsh cough and would vomit up his formula. Have they done a recent culture on your daughter. In DS case he had cultured enterbactor choclae (sp) with bronchitis, so his doctor put him on Septra and had us continue to do 4 cpt and neb (duoneb) treatments a day, plus little mini ones while we were holding him, to beat that cough out of him. I believe he was also put on Tobi nebs at that time as well.

I was home on maternity leave at the time DS got sick and we hadn't taken him anywhere really except to the clinic for his shots and anytime we did take him somewhere he was in his carseat carrier, anyone who wanted to hold him had to wash their hand/santizer before touching him. So who knows where he picked up his little but.

I'm sure you know to keep an eye on increased respirations, retracting...
 

Ratatosk

Administrator
Staff member
DS had similar issues when he was a baby. He was already ON keflex and developed a harsh cough and would vomit up his formula. Have they done a recent culture on your daughter. In DS case he had cultured enterbactor choclae (sp) with bronchitis, so his doctor put him on Septra and had us continue to do 4 cpt and neb (duoneb) treatments a day, plus little mini ones while we were holding him, to beat that cough out of him. I believe he was also put on Tobi nebs at that time as well.

I was home on maternity leave at the time DS got sick and we hadn't taken him anywhere really except to the clinic for his shots and anytime we did take him somewhere he was in his carseat carrier, anyone who wanted to hold him had to wash their hand/santizer before touching him. So who knows where he picked up his little but.

I'm sure you know to keep an eye on increased respirations, retracting...
 

Ratatosk

Administrator
Staff member
DS had similar issues when he was a baby. He was already ON keflex and developed a harsh cough and would vomit up his formula. Have they done a recent culture on your daughter. In DS case he had cultured enterbactor choclae (sp) with bronchitis, so his doctor put him on Septra and had us continue to do 4 cpt and neb (duoneb) treatments a day, plus little mini ones while we were holding him, to beat that cough out of him. I believe he was also put on Tobi nebs at that time as well.

I was home on maternity leave at the time DS got sick and we hadn't taken him anywhere really except to the clinic for his shots and anytime we did take him somewhere he was in his carseat carrier, anyone who wanted to hold him had to wash their hand/santizer before touching him. So who knows where he picked up his little but.

I'm sure you know to keep an eye on increased respirations, retracting...
 

Ratatosk

Administrator
Staff member
DS had similar issues when he was a baby. He was already ON keflex and developed a harsh cough and would vomit up his formula. Have they done a recent culture on your daughter. In DS case he had cultured enterbactor choclae (sp) with bronchitis, so his doctor put him on Septra and had us continue to do 4 cpt and neb (duoneb) treatments a day, plus little mini ones while we were holding him, to beat that cough out of him. I believe he was also put on Tobi nebs at that time as well.

I was home on maternity leave at the time DS got sick and we hadn't taken him anywhere really except to the clinic for his shots and anytime we did take him somewhere he was in his carseat carrier, anyone who wanted to hold him had to wash their hand/santizer before touching him. So who knows where he picked up his little but.

I'm sure you know to keep an eye on increased respirations, retracting...
 

Ratatosk

Administrator
Staff member
DS had similar issues when he was a baby. He was already ON keflex and developed a harsh cough and would vomit up his formula. Have they done a recent culture on your daughter. In DS case he had cultured enterbactor choclae (sp) with bronchitis, so his doctor put him on Septra and had us continue to do 4 cpt and neb (duoneb) treatments a day, plus little mini ones while we were holding him, to beat that cough out of him. I believe he was also put on Tobi nebs at that time as well.
<br />
<br />I was home on maternity leave at the time DS got sick and we hadn't taken him anywhere really except to the clinic for his shots and anytime we did take him somewhere he was in his carseat carrier, anyone who wanted to hold him had to wash their hand/santizer before touching him. So who knows where he picked up his little but.
<br />
<br />I'm sure you know to keep an eye on increased respirations, retracting...
 
M

Mommafirst

Guest
Christy -- it sounds like you and your doctors have been doing everything right. You did nothing wrong. As much as you keep germs away, they are there and not always avoidable.

Hopefully the Septra will end the cough. Your daughter sounds a lot like mine, who only cultures Staph or gets clear cultures. Unfortunately, my duaghter rarely responds well to the oral antibiotics. We are on Bactrim (thats the same as Septra, I think) now. And we are doing a lot of finger crossing that we won't need to go to IVs.

I know the hospital is the last thing you want. And I hope that you won't have to go there -- but if it is necessary, keep in mind that you can help force a protocol that requires gowning up for all that enter the room and strict germ control. Further, since you are a nurse, you can likely push to get her on home IVs quickly once the protocol is underway and they know she is doing well on IVs.

((((HUGS)))) I hope Lucy will pull out of this on the oral abx.
 
M

Mommafirst

Guest
Christy -- it sounds like you and your doctors have been doing everything right. You did nothing wrong. As much as you keep germs away, they are there and not always avoidable.

Hopefully the Septra will end the cough. Your daughter sounds a lot like mine, who only cultures Staph or gets clear cultures. Unfortunately, my duaghter rarely responds well to the oral antibiotics. We are on Bactrim (thats the same as Septra, I think) now. And we are doing a lot of finger crossing that we won't need to go to IVs.

I know the hospital is the last thing you want. And I hope that you won't have to go there -- but if it is necessary, keep in mind that you can help force a protocol that requires gowning up for all that enter the room and strict germ control. Further, since you are a nurse, you can likely push to get her on home IVs quickly once the protocol is underway and they know she is doing well on IVs.

((((HUGS)))) I hope Lucy will pull out of this on the oral abx.
 
M

Mommafirst

Guest
Christy -- it sounds like you and your doctors have been doing everything right. You did nothing wrong. As much as you keep germs away, they are there and not always avoidable.

Hopefully the Septra will end the cough. Your daughter sounds a lot like mine, who only cultures Staph or gets clear cultures. Unfortunately, my duaghter rarely responds well to the oral antibiotics. We are on Bactrim (thats the same as Septra, I think) now. And we are doing a lot of finger crossing that we won't need to go to IVs.

I know the hospital is the last thing you want. And I hope that you won't have to go there -- but if it is necessary, keep in mind that you can help force a protocol that requires gowning up for all that enter the room and strict germ control. Further, since you are a nurse, you can likely push to get her on home IVs quickly once the protocol is underway and they know she is doing well on IVs.

((((HUGS)))) I hope Lucy will pull out of this on the oral abx.
 
M

Mommafirst

Guest
Christy -- it sounds like you and your doctors have been doing everything right. You did nothing wrong. As much as you keep germs away, they are there and not always avoidable.

Hopefully the Septra will end the cough. Your daughter sounds a lot like mine, who only cultures Staph or gets clear cultures. Unfortunately, my duaghter rarely responds well to the oral antibiotics. We are on Bactrim (thats the same as Septra, I think) now. And we are doing a lot of finger crossing that we won't need to go to IVs.

I know the hospital is the last thing you want. And I hope that you won't have to go there -- but if it is necessary, keep in mind that you can help force a protocol that requires gowning up for all that enter the room and strict germ control. Further, since you are a nurse, you can likely push to get her on home IVs quickly once the protocol is underway and they know she is doing well on IVs.

((((HUGS)))) I hope Lucy will pull out of this on the oral abx.
 
M

Mommafirst

Guest
Christy -- it sounds like you and your doctors have been doing everything right. You did nothing wrong. As much as you keep germs away, they are there and not always avoidable.
<br />
<br />Hopefully the Septra will end the cough. Your daughter sounds a lot like mine, who only cultures Staph or gets clear cultures. Unfortunately, my duaghter rarely responds well to the oral antibiotics. We are on Bactrim (thats the same as Septra, I think) now. And we are doing a lot of finger crossing that we won't need to go to IVs.
<br />
<br />I know the hospital is the last thing you want. And I hope that you won't have to go there -- but if it is necessary, keep in mind that you can help force a protocol that requires gowning up for all that enter the room and strict germ control. Further, since you are a nurse, you can likely push to get her on home IVs quickly once the protocol is underway and they know she is doing well on IVs.
<br />
<br />((((HUGS)))) I hope Lucy will pull out of this on the oral abx.
 
S

sdelorenzo

Guest
I would take her to the pediatrician to test for H1N1 to be sure. My daughter had it a few weeks ago and Tami-flu really helped get rid of it. The fever with H1N1 is lower grade like you mentioned your daughter having and then a cough to follow. It sounds like what happened to my daughter. She had a cough for about 10 days then we started antibiotics. Two days later her cough got worse and thats when she came home sick with the flu. Hope your daughter feels better soon.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 8 months no cf
 
S

sdelorenzo

Guest
I would take her to the pediatrician to test for H1N1 to be sure. My daughter had it a few weeks ago and Tami-flu really helped get rid of it. The fever with H1N1 is lower grade like you mentioned your daughter having and then a cough to follow. It sounds like what happened to my daughter. She had a cough for about 10 days then we started antibiotics. Two days later her cough got worse and thats when she came home sick with the flu. Hope your daughter feels better soon.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 8 months no cf
 
S

sdelorenzo

Guest
I would take her to the pediatrician to test for H1N1 to be sure. My daughter had it a few weeks ago and Tami-flu really helped get rid of it. The fever with H1N1 is lower grade like you mentioned your daughter having and then a cough to follow. It sounds like what happened to my daughter. She had a cough for about 10 days then we started antibiotics. Two days later her cough got worse and thats when she came home sick with the flu. Hope your daughter feels better soon.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 8 months no cf
 
S

sdelorenzo

Guest
I would take her to the pediatrician to test for H1N1 to be sure. My daughter had it a few weeks ago and Tami-flu really helped get rid of it. The fever with H1N1 is lower grade like you mentioned your daughter having and then a cough to follow. It sounds like what happened to my daughter. She had a cough for about 10 days then we started antibiotics. Two days later her cough got worse and thats when she came home sick with the flu. Hope your daughter feels better soon.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 8 months no cf
 
S

sdelorenzo

Guest
I would take her to the pediatrician to test for H1N1 to be sure. My daughter had it a few weeks ago and Tami-flu really helped get rid of it. The fever with H1N1 is lower grade like you mentioned your daughter having and then a cough to follow. It sounds like what happened to my daughter. She had a cough for about 10 days then we started antibiotics. Two days later her cough got worse and thats when she came home sick with the flu. Hope your daughter feels better soon.
<br />Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 8 months no cf
 
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