worried about Josh

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bmombtoo

New member
About a month ago Josh had his regular CF checkup and his lung functions were down below not sure, I think 70 to 75. His doctor put him on antibiotics and increased his xopenex to three times a day (switching to the solution at night), and increased the use of his acapella to 2x a day. He had sius symptoms about a week befoe this. He wnet back on wednesday for a one month follow up and his lungs functions were at 60. The PT came in and wnet over techniques. His doctor changed his meds to 1500 mg of Cipro daily for 3 weeeks, 60 mg of prednisone for 5 days and then a standard every 3 day taper down.  If his lung functions are still down at the next follow up he will have to go inpatient for IV antibiotics and to have a central line or some sort of line started. He will then get IV antibiotics at home. This is all new to me so I am worried and scared. If any of you are familiar with this or experienced this please share your experience with me.
This is the lowest he has ever been since his diagnosed in 2005. He doesn't feel ill, and doesn't look ill. In the very beginning he was sleeping more than usual so I took him to the pediatrician.
 
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bmombtoo

New member
About a month ago Josh had his regular CF checkup and his lung functions were down below not sure, I think 70 to 75. His doctor put him on antibiotics and increased his xopenex to three times a day (switching to the solution at night), and increased the use of his acapella to 2x a day. He had sius symptoms about a week befoe this. He wnet back on wednesday for a one month follow up and his lungs functions were at 60. The PT came in and wnet over techniques. His doctor changed his meds to 1500 mg of Cipro daily for 3 weeeks, 60 mg of prednisone for 5 days and then a standard every 3 day taper down. If his lung functions are still down at the next follow up he will have to go inpatient for IV antibiotics and to have a central line or some sort of line started. He will then get IV antibiotics at home.This is all new to me so I am worried and scared. If any of you are familiar with this or experienced this please share your experience with me.
This is the lowest he has ever been since his diagnosed in 2005. He doesn't feel ill, and doesn't look ill. In the very beginning he was sleeping more than usual so I took him to the pediatrician.
 
B

bmombtoo

New member
<p>About a month ago Josh had his regular CF checkup and his lung functions were down below not sure, I think 70 to 75. His doctor put him on antibiotics and increased his xopenex to three times a day (switching to the solution at night), and increased the use of his acapella to 2x a day. He had sius symptoms about a week befoe this. He wnet back on wednesday for a one month follow up and his lungs functions were at 60. The PT came in and wnet over techniques. His doctor changed his meds to 1500 mg of Cipro daily for 3 weeeks, 60 mg of prednisone for 5 days and then a standard every 3 day taper down. If his lung functions are still down at the next follow up he will have to go inpatient for IV antibiotics and to have a central line or some sort of line started. He will then get IV antibiotics at home.This is all new to me so I am worried and scared. If any of you are familiar with this or experienced this please share your experience with me.
<p>This is the lowest he has ever been since his diagnosed in 2005. He doesn't feel ill, and doesn't look ill. In the very beginning he was sleeping more than usual so I took him to the pediatrician.
 
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Tammy15

New member
First time my daughter came home on IVS I was a wreck she was about 16 17 and it was actaully an IV with poll and machine that you had to start.  I can remember her IV backing up and being a nervous wreck our visiting nurse was 3 hrs away, but something just kicked in and all I remember is telling myself keep flushing it.  It became easier by the second day.  Hardest thing was med times one ran for 1 hr and another for almost 2 so I would be up and down all night to make sure I took meds out of fridge she could sleep while I did it all flushing the line wiping the tip with alcohol.  When she was about 18 and had to be on home IVS they did a picc line and she learned there were these ball things that had meds in them and a pump she so preferred that and she could go out shopping etc as she was not tied to an IV pole .  My only job was to get up take meds out of fridge about 30 mins before use, set up her alcholol wipes and wake her up when it was time. she really did most of it.
I hope his next PFT are good
 
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Tammy15

New member
First time my daughter came home on IVS I was a wreck she was about 16 17 and it was actaully an IV with poll and machine that you had to start. I can remember her IV backing up and being a nervous wreck our visiting nurse was 3 hrs away, but something just kicked in and all I remember is telling myself keep flushing it. It became easier by the second day. Hardest thing was med times one ran for 1 hr and another for almost 2 so I would be up and down all night to make sure I took meds out of fridge she could sleep while I did it all flushing the line wiping the tip with alcohol. When she was about 18 and had to be on home IVS they did a picc line and she learned there were these ball things that had meds in them and a pump she so preferred that and she could go out shopping etc as she was not tied to an IV pole . My only job was to get up take meds out of fridge about 30 mins before use, set up her alcholol wipes and wake her up when it was time. she really did most of it.
I hope his next PFT are good
 
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Tammy15

New member
<p>First time my daughter came home on IVS I was a wreck she was about 16 17 and it was actaully an IV with poll and machine that you had to start. I can remember her IV backing up and being a nervous wreck our visiting nurse was 3 hrs away, but something just kicked in and all I remember is telling myself keep flushing it. It became easier by the second day. Hardest thing was med times one ran for 1 hr and another for almost 2 so I would be up and down all night to make sure I took meds out of fridge she could sleep while I did it all flushing the line wiping the tip with alcohol. When she was about 18 and had to be on home IVS they did a picc line and she learned there were these ball things that had meds in them and a pump she so preferred that and she could go out shopping etc as she was not tied to an IV pole . My only job was to get up take meds out of fridge about 30 mins before use, set up her alcholol wipes and wake her up when it was time. she really did most of it.
<p>I hope his next PFT are good
 
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tammykrumrey

Guest
Dolline, sorry that you are all going through such a rough time right now<img src="i/expressions/face-icon-small-sad.gif" border="0"> Do you know what he cultures? Maybe that could help with some suggestions... My 13 year old had a rough road back in the fall. Her FEV1 dropped from 98% to 46% in less than two weeks. She had just been in the hospital, on IV meds for two weeks a month before the large drop. So, we were pretty much scared to death!!

She cultures MAC, B. Mulitivorans, MRSA and sometimes PA. Her IGE levels were high while in the hosptial, but the 'special' test sent off to Hopkins came back negative for ABPA (although all other test pointed to ABPA). Since she had responded to the IV meds, she wasn't treated for the Aspergillis. BUT, when she dropped so far, her doctor immediately treated her with Prednisone and VFend. And her PFTs came back up in about a three week span!

She stayed on the Prednisone for 4 months, and has been on the VFend since October. It has helped her tremendously. She is sick now, and we are trying to keep her out of the hospital again...I don't feel that this time it is the ABPA, simply because the cough is different! I think something else is flaring it's ugly head<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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tammykrumrey

Guest
Dolline, sorry that you are all going through such a rough time right now<img src="i/expressions/face-icon-small-sad.gif" border="0"> Do you know what he cultures? Maybe that could help with some suggestions... My 13 year old had a rough road back in the fall. Her FEV1 dropped from 98% to 46% in less than two weeks. She had just been in the hospital, on IV meds for two weeks a month before the large drop. So, we were pretty much scared to death!!

She cultures MAC, B. Mulitivorans, MRSA and sometimes PA. Her IGE levels were high while in the hosptial, but the 'special' test sent off to Hopkins came back negative for ABPA (although all other test pointed to ABPA). Since she had responded to the IV meds, she wasn't treated for the Aspergillis. BUT, when she dropped so far, her doctor immediately treated her with Prednisone and VFend. And her PFTs came back up in about a three week span!

She stayed on the Prednisone for 4 months, and has been on the VFend since October. It has helped her tremendously. She is sick now, and we are trying to keep her out of the hospital again...I don't feel that this time it is the ABPA, simply because the cough is different! I think something else is flaring it's ugly head<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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tammykrumrey

Guest
Dolline, sorry that you are all going through such a rough time right now<img src="i/expressions/face-icon-small-sad.gif" border="0"> Do you know what he cultures? Maybe that could help with some suggestions... My 13 year old had a rough road back in the fall. Her FEV1 dropped from 98% to 46% in less than two weeks. She had just been in the hospital, on IV meds for two weeks a month before the large drop. So, we were pretty much scared to death!!
<br />
<br />She cultures MAC, B. Mulitivorans, MRSA and sometimes PA. Her IGE levels were high while in the hosptial, but the 'special' test sent off to Hopkins came back negative for ABPA (although all other test pointed to ABPA). Since she had responded to the IV meds, she wasn't treated for the Aspergillis. BUT, when she dropped so far, her doctor immediately treated her with Prednisone and VFend. And her PFTs came back up in about a three week span!
<br />
<br />She stayed on the Prednisone for 4 months, and has been on the VFend since October. It has helped her tremendously. She is sick now, and we are trying to keep her out of the hospital again...I don't feel that this time it is the ABPA, simply because the cough is different! I think something else is flaring it's ugly head<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
Dolline, sorry that you are all going through such a rough time right now<img src="i/expressions/face-icon-small-sad.gif" border="0"> Do you know what he cultures? Maybe that could help with some suggestions... My 13 year old had a rough road back in the fall. Her FEV1 dropped from 98% to 46% in less than two weeks. She had just been in the hospital, on IV meds for two weeks a month before the large drop. So, we were pretty much scared to death!!

She cultures MAC, B. Mulitivorans, MRSA and sometimes PA. Her IGE levels were high while in the hosptial, but the 'special' test sent off to Hopkins came back negative for ABPA (although all other test pointed to ABPA). Since she had responded to the IV meds, she wasn't treated for the Aspergillis. BUT, when she dropped so far, her doctor immediately treated her with Prednisone and VFend. And her PFTs came back up in about a three week span!

She stayed on the Prednisone for 4 months, and has been on the VFend since October. It has helped her tremendously. She is sick now, and we are trying to keep her out of the hospital again...I don't feel that this time it is the ABPA, simply because the cough is different! I think something else is flaring it's ugly head<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
Dolline, sorry that you are all going through such a rough time right now<img src="i/expressions/face-icon-small-sad.gif" border="0"> Do you know what he cultures? Maybe that could help with some suggestions... My 13 year old had a rough road back in the fall. Her FEV1 dropped from 98% to 46% in less than two weeks. She had just been in the hospital, on IV meds for two weeks a month before the large drop. So, we were pretty much scared to death!!

She cultures MAC, B. Mulitivorans, MRSA and sometimes PA. Her IGE levels were high while in the hosptial, but the 'special' test sent off to Hopkins came back negative for ABPA (although all other test pointed to ABPA). Since she had responded to the IV meds, she wasn't treated for the Aspergillis. BUT, when she dropped so far, her doctor immediately treated her with Prednisone and VFend. And her PFTs came back up in about a three week span!

She stayed on the Prednisone for 4 months, and has been on the VFend since October. It has helped her tremendously. She is sick now, and we are trying to keep her out of the hospital again...I don't feel that this time it is the ABPA, simply because the cough is different! I think something else is flaring it's ugly head<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
Dolline, sorry that you are all going through such a rough time right now<img src="i/expressions/face-icon-small-sad.gif" border="0"> Do you know what he cultures? Maybe that could help with some suggestions... My 13 year old had a rough road back in the fall. Her FEV1 dropped from 98% to 46% in less than two weeks. She had just been in the hospital, on IV meds for two weeks a month before the large drop. So, we were pretty much scared to death!!
<br />
<br />She cultures MAC, B. Mulitivorans, MRSA and sometimes PA. Her IGE levels were high while in the hosptial, but the 'special' test sent off to Hopkins came back negative for ABPA (although all other test pointed to ABPA). Since she had responded to the IV meds, she wasn't treated for the Aspergillis. BUT, when she dropped so far, her doctor immediately treated her with Prednisone and VFend. And her PFTs came back up in about a three week span!
<br />
<br />She stayed on the Prednisone for 4 months, and has been on the VFend since October. It has helped her tremendously. She is sick now, and we are trying to keep her out of the hospital again...I don't feel that this time it is the ABPA, simply because the cough is different! I think something else is flaring it's ugly head<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

LisaGreene

New member
Dolline- (what a wonderful name!)- how hard and scary this is, seeing our child's pft's drop like this. We had a similar situation with my daughter last year and ended up on IV antiobiotics. Her pft's came back up so keep a positive spirit- it's possible. :)
And my son has had home IV's twice now. Once when he was about 7 and then a year ago (he's 12 now). I totally understand being nervous about it- I have no medical background so was pretty freaked- but it's not hard. They make it easy and it's not hard to learn once you get over the fear factor. You'll be a pro before you know it.
Just be sure to know what the warning signs are for "trouble" and have a plan for nights/ weekends if there is some sort of emergency. The home health nurses we had were good (most of them anyways) but like everything else, write everything down, ask lots of guestions and be assertive to get what you need done.
Keeping you in my thoughts and prayers- you can do it!! Lisa
 
 
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LisaGreene

New member
Dolline- (what a wonderful name!)- how hard and scary this is, seeing our child's pft's drop like this. We had a similar situation with my daughter last year and ended up on IV antiobiotics. Her pft's came back up so keep a positive spirit- it's possible. :)
And my son has had home IV's twice now. Once when he was about 7 and then a year ago (he's 12 now). I totally understand being nervous about it- I have no medical background so was pretty freaked- but it's not hard. They make it easy and it's not hard to learn once you get over the fear factor. You'll be a pro before you know it.
Just be sure to know what the warning signs are for "trouble" and have a plan for nights/ weekends if there is some sort of emergency. The home health nurses we had were good (most of them anyways) but like everything else, write everything down, ask lots of guestions and be assertive to get what you need done.
Keeping you in my thoughts and prayers- you can do it!! Lisa
 
L

LisaGreene

New member
<p>Dolline- (what a wonderful name!)- how hard and scary this is, seeing our child's pft's drop like this. We had a similar situation with my daughter last year and ended up on IV antiobiotics. Her pft's came back up so keep a positive spirit- it's possible. :)
<p>And my son has had home IV's twice now. Once when he was about 7 and then a year ago (he's 12 now). I totally understand being nervous about it- I have no medical background so was pretty freaked- but it's not hard. They make it easy and it's not hard to learn once you get over the fear factor. You'll be a pro before you know it.
<p>Just be sure to know what the warning signs are for "trouble" and have a plan for nights/ weekends if there is some sort of emergency. The home health nurses we had were good (most of them anyways) but like everything else, write everything down, ask lots of guestions and be assertive to get what you need done.
<p>Keeping you in my thoughts and prayers- you can do it!! Lisa
<p>
 
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bmombtoo

New member
thanks for the advice and tips. It is so nice to hear from people who have already "walked there. I hadn't thought about having to give the meds, I thought a visting nurse would handle that. I don't think there has been much of a change in his lung functions as he still isn't going outside when his freinds do. He use to play a little ball with them and then watch. Will find out soon whats up. By the way he had that Aspergillis sstuff once. Recently his cultures have been negative unless Dr. Zeitlin forgot to tell us.
I'll keep you all posted.
 
B

bmombtoo

New member
thanks for the advice and tips. It is so nice to hear from people who have already "walked there. I hadn't thought about having to give the meds, I thought a visting nurse would handle that. I don't think there has been much of a change in his lung functions as he still isn't going outside when his freinds do. He use to play a little ball with them and then watch. Will find out soon whats up. By the way he had that Aspergillis sstuff once. Recently his cultures have been negative unless Dr. Zeitlin forgot to tell us.
I'll keep you all posted.
 
B

bmombtoo

New member
thanks for the advice and tips. It is so nice to hear from people who have already "walked there. I hadn't thought about having to give the meds, I thought a visting nurse would handle that. I don't think there has been much of a change in his lung functions as he still isn't going outside when his freinds do. He use to play a little ball with them and then watch. Will find out soon whats up. By the way he had that Aspergillis sstuff once. Recently his cultures have been negative unless Dr. Zeitlin forgot to tell us.
<br />I'll keep you all posted.
 
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