Freaking Out Over Clinic Visit....Help

[DEES4]

My son had his clinic visit yesterday and it didn't go as good as I had hoped. I have been freaking out a little and am needing some questions answered. First of all he did gain weight and his BMI is now up to 30% but of course they want it to be 50%. The docs and I am not worried about this as we feel sure that we can get him there.

They did tell me though that he has nasal polyps. This is the first time I have ever been told this (he is 5 years old). So how do you know when it's serious enough for surgery? What do I need to look out for? They said that if he has a runny nose, breathing through his mouth, or coughs than that could mean he needs surgery. But I wanted to hear from those of you who have actually had a child or themselves that had to have the surgery.

Then he had his first lung function test. His FEV1 was only 74 and the test had a small scoop which they said is a sign of trapping air in the lungs and his number for the small airways was only 52 which is a sign that mucus is stuck in his small airways. They did say he had some trouble with the test so the numbers might be better as he learns to do it better. But that the scoop was still a concern. So I am freaking out. I don't know if the numbers are really truly correct or if he just couldn't do the test correctly.

Any advice, opinions, things I can do to help him be able to do the test better next time?? Anyone with a 5 year old that got less than perfect numbers on the first time doing the test?

 

[DEES4]

My son had his clinic visit yesterday and it didn't go as good as I had hoped. I have been freaking out a little and am needing some questions answered. First of all he did gain weight and his BMI is now up to 30% but of course they want it to be 50%. The docs and I am not worried about this as we feel sure that we can get him there.

They did tell me though that he has nasal polyps. This is the first time I have ever been told this (he is 5 years old). So how do you know when it's serious enough for surgery? What do I need to look out for? They said that if he has a runny nose, breathing through his mouth, or coughs than that could mean he needs surgery. But I wanted to hear from those of you who have actually had a child or themselves that had to have the surgery.

Then he had his first lung function test. His FEV1 was only 74 and the test had a small scoop which they said is a sign of trapping air in the lungs and his number for the small airways was only 52 which is a sign that mucus is stuck in his small airways. They did say he had some trouble with the test so the numbers might be better as he learns to do it better. But that the scoop was still a concern. So I am freaking out. I don't know if the numbers are really truly correct or if he just couldn't do the test correctly.

Any advice, opinions, things I can do to help him be able to do the test better next time?? Anyone with a 5 year old that got less than perfect numbers on the first time doing the test?

 

[DEES4]

My son had his clinic visit yesterday and it didn't go as good as I had hoped. I have been freaking out a little and am needing some questions answered. First of all he did gain weight and his BMI is now up to 30% but of course they want it to be 50%. The docs and I am not worried about this as we feel sure that we can get him there.

They did tell me though that he has nasal polyps. This is the first time I have ever been told this (he is 5 years old). So how do you know when it's serious enough for surgery? What do I need to look out for? They said that if he has a runny nose, breathing through his mouth, or coughs than that could mean he needs surgery. But I wanted to hear from those of you who have actually had a child or themselves that had to have the surgery.

Then he had his first lung function test. His FEV1 was only 74 and the test had a small scoop which they said is a sign of trapping air in the lungs and his number for the small airways was only 52 which is a sign that mucus is stuck in his small airways. They did say he had some trouble with the test so the numbers might be better as he learns to do it better. But that the scoop was still a concern. So I am freaking out. I don't know if the numbers are really truly correct or if he just couldn't do the test correctly.

Any advice, opinions, things I can do to help him be able to do the test better next time?? Anyone with a 5 year old that got less than perfect numbers on the first time doing the test?

 

[DEES4]

My son had his clinic visit yesterday and it didn't go as good as I had hoped. I have been freaking out a little and am needing some questions answered. First of all he did gain weight and his BMI is now up to 30% but of course they want it to be 50%. The docs and I am not worried about this as we feel sure that we can get him there.

They did tell me though that he has nasal polyps. This is the first time I have ever been told this (he is 5 years old). So how do you know when it's serious enough for surgery? What do I need to look out for? They said that if he has a runny nose, breathing through his mouth, or coughs than that could mean he needs surgery. But I wanted to hear from those of you who have actually had a child or themselves that had to have the surgery.

Then he had his first lung function test. His FEV1 was only 74 and the test had a small scoop which they said is a sign of trapping air in the lungs and his number for the small airways was only 52 which is a sign that mucus is stuck in his small airways. They did say he had some trouble with the test so the numbers might be better as he learns to do it better. But that the scoop was still a concern. So I am freaking out. I don't know if the numbers are really truly correct or if he just couldn't do the test correctly.

Any advice, opinions, things I can do to help him be able to do the test better next time?? Anyone with a 5 year old that got less than perfect numbers on the first time doing the test?

 

[DEES4]

My son had his clinic visit yesterday and it didn't go as good as I had hoped. I have been freaking out a little and am needing some questions answered. First of all he did gain weight and his BMI is now up to 30% but of course they want it to be 50%. The docs and I am not worried about this as we feel sure that we can get him there.
<br />
<br />They did tell me though that he has nasal polyps. This is the first time I have ever been told this (he is 5 years old). So how do you know when it's serious enough for surgery? What do I need to look out for? They said that if he has a runny nose, breathing through his mouth, or coughs than that could mean he needs surgery. But I wanted to hear from those of you who have actually had a child or themselves that had to have the surgery.
<br />
<br />Then he had his first lung function test. His FEV1 was only 74 and the test had a small scoop which they said is a sign of trapping air in the lungs and his number for the small airways was only 52 which is a sign that mucus is stuck in his small airways. They did say he had some trouble with the test so the numbers might be better as he learns to do it better. But that the scoop was still a concern. So I am freaking out. I don't know if the numbers are really truly correct or if he just couldn't do the test correctly.
<br />
<br />Any advice, opinions, things I can do to help him be able to do the test better next time?? Anyone with a 5 year old that got less than perfect numbers on the first time doing the test?

 

[Rebjane]

I'm sorry the clinic appointment didn't go as weel as you'ld hoped..I don't have too much info on nasal polyps but i'm sure there are others on here that have been through that with thier young one. Did the doc give you any suggestions in regards to nasal rinses and such? I know when Maggie was having some sinus issues, the CF doc suggested Hypertonic saline rinses(not fun for the kids) but cleans out the boogers. The PFT's is a skill that the little kids need to master. This was your son's first time? I know that Maggie had to to the PFT's a couple times before she got a # they liked..She'ld blow to fast or too slow...Maybe at home you could practice blowing up balloons or blowing bubbles? Also, did the CF doc make suggesetions for the mucus in small airways? Anything like HTS nebs? or huff coughing with the VEST? Just some random thoughts I had, though it's apparent I am a proponent of HTS. Don't stress too much...Hugs to you.

 

[Rebjane]

I'm sorry the clinic appointment didn't go as weel as you'ld hoped..I don't have too much info on nasal polyps but i'm sure there are others on here that have been through that with thier young one. Did the doc give you any suggestions in regards to nasal rinses and such? I know when Maggie was having some sinus issues, the CF doc suggested Hypertonic saline rinses(not fun for the kids) but cleans out the boogers. The PFT's is a skill that the little kids need to master. This was your son's first time? I know that Maggie had to to the PFT's a couple times before she got a # they liked..She'ld blow to fast or too slow...Maybe at home you could practice blowing up balloons or blowing bubbles? Also, did the CF doc make suggesetions for the mucus in small airways? Anything like HTS nebs? or huff coughing with the VEST? Just some random thoughts I had, though it's apparent I am a proponent of HTS. Don't stress too much...Hugs to you.

 

[Rebjane]

I'm sorry the clinic appointment didn't go as weel as you'ld hoped..I don't have too much info on nasal polyps but i'm sure there are others on here that have been through that with thier young one. Did the doc give you any suggestions in regards to nasal rinses and such? I know when Maggie was having some sinus issues, the CF doc suggested Hypertonic saline rinses(not fun for the kids) but cleans out the boogers. The PFT's is a skill that the little kids need to master. This was your son's first time? I know that Maggie had to to the PFT's a couple times before she got a # they liked..She'ld blow to fast or too slow...Maybe at home you could practice blowing up balloons or blowing bubbles? Also, did the CF doc make suggesetions for the mucus in small airways? Anything like HTS nebs? or huff coughing with the VEST? Just some random thoughts I had, though it's apparent I am a proponent of HTS. Don't stress too much...Hugs to you.

 

[Rebjane]

I'm sorry the clinic appointment didn't go as weel as you'ld hoped..I don't have too much info on nasal polyps but i'm sure there are others on here that have been through that with thier young one. Did the doc give you any suggestions in regards to nasal rinses and such? I know when Maggie was having some sinus issues, the CF doc suggested Hypertonic saline rinses(not fun for the kids) but cleans out the boogers. The PFT's is a skill that the little kids need to master. This was your son's first time? I know that Maggie had to to the PFT's a couple times before she got a # they liked..She'ld blow to fast or too slow...Maybe at home you could practice blowing up balloons or blowing bubbles? Also, did the CF doc make suggesetions for the mucus in small airways? Anything like HTS nebs? or huff coughing with the VEST? Just some random thoughts I had, though it's apparent I am a proponent of HTS. Don't stress too much...Hugs to you.

 

[Rebjane]

I'm sorry the clinic appointment didn't go as weel as you'ld hoped..I don't have too much info on nasal polyps but i'm sure there are others on here that have been through that with thier young one. Did the doc give you any suggestions in regards to nasal rinses and such? I know when Maggie was having some sinus issues, the CF doc suggested Hypertonic saline rinses(not fun for the kids) but cleans out the boogers. The PFT's is a skill that the little kids need to master. This was your son's first time? I know that Maggie had to to the PFT's a couple times before she got a # they liked..She'ld blow to fast or too slow...Maybe at home you could practice blowing up balloons or blowing bubbles? Also, did the CF doc make suggesetions for the mucus in small airways? Anything like HTS nebs? or huff coughing with the VEST? Just some random thoughts I had, though it's apparent I am a proponent of HTS. Don't stress too much...Hugs to you.

 

[DEES4]

Rebecca,
Thanks for your reply. Yes this was his first time to do PFT's so hopefully the numbers will be better next time. No they did not suggest anything for the mucus in the small airways. They said to just continue doing what we are doing and that he could exercize more. But honestly he plays hard all the time. Trampoline, running, riding his bike so I don't really think he could get anymore than he already does. I have asked about hypertonic saline before but doc did not want to give it to him. Sooo.... maybe I will ask about it again next time.

 

[DEES4]

Rebecca,
Thanks for your reply. Yes this was his first time to do PFT's so hopefully the numbers will be better next time. No they did not suggest anything for the mucus in the small airways. They said to just continue doing what we are doing and that he could exercize more. But honestly he plays hard all the time. Trampoline, running, riding his bike so I don't really think he could get anymore than he already does. I have asked about hypertonic saline before but doc did not want to give it to him. Sooo.... maybe I will ask about it again next time.

 

[DEES4]

Rebecca,
Thanks for your reply. Yes this was his first time to do PFT's so hopefully the numbers will be better next time. No they did not suggest anything for the mucus in the small airways. They said to just continue doing what we are doing and that he could exercize more. But honestly he plays hard all the time. Trampoline, running, riding his bike so I don't really think he could get anymore than he already does. I have asked about hypertonic saline before but doc did not want to give it to him. Sooo.... maybe I will ask about it again next time.

 

[DEES4]

Rebecca,
Thanks for your reply. Yes this was his first time to do PFT's so hopefully the numbers will be better next time. No they did not suggest anything for the mucus in the small airways. They said to just continue doing what we are doing and that he could exercize more. But honestly he plays hard all the time. Trampoline, running, riding his bike so I don't really think he could get anymore than he already does. I have asked about hypertonic saline before but doc did not want to give it to him. Sooo.... maybe I will ask about it again next time.

 

[DEES4]

Rebecca,
<br />Thanks for your reply. Yes this was his first time to do PFT's so hopefully the numbers will be better next time. No they did not suggest anything for the mucus in the small airways. They said to just continue doing what we are doing and that he could exercize more. But honestly he plays hard all the time. Trampoline, running, riding his bike so I don't really think he could get anymore than he already does. I have asked about hypertonic saline before but doc did not want to give it to him. Sooo.... maybe I will ask about it again next time.

 

[JazzysMom]

I would ask for a nasal steroid to try & shrink the polyps first. My understanding from my CF ENT is that chances of a CFer having polyps grow back is high so nasal sprays should be attempted before surgery.

THAT being said.......even tho your son is having problems with doing the PFT there still seems to be a decline. Is he doing CPT in addition to exercise?

Although exercise is fantastic....CPT/Nebs loosen & help get the junk ready to be coughed up & out hence making the exercise even more rewarding. Once the small airways are plugged...it takes a lot more work to get them clear. A lot more work then the larger airways.

I am sorry things didnt go as well as you hoped.

 

[JazzysMom]

I would ask for a nasal steroid to try & shrink the polyps first. My understanding from my CF ENT is that chances of a CFer having polyps grow back is high so nasal sprays should be attempted before surgery.

THAT being said.......even tho your son is having problems with doing the PFT there still seems to be a decline. Is he doing CPT in addition to exercise?

Although exercise is fantastic....CPT/Nebs loosen & help get the junk ready to be coughed up & out hence making the exercise even more rewarding. Once the small airways are plugged...it takes a lot more work to get them clear. A lot more work then the larger airways.

I am sorry things didnt go as well as you hoped.

 

[JazzysMom]

I would ask for a nasal steroid to try & shrink the polyps first. My understanding from my CF ENT is that chances of a CFer having polyps grow back is high so nasal sprays should be attempted before surgery.

THAT being said.......even tho your son is having problems with doing the PFT there still seems to be a decline. Is he doing CPT in addition to exercise?

Although exercise is fantastic....CPT/Nebs loosen & help get the junk ready to be coughed up & out hence making the exercise even more rewarding. Once the small airways are plugged...it takes a lot more work to get them clear. A lot more work then the larger airways.

I am sorry things didnt go as well as you hoped.

 

[JazzysMom]

I would ask for a nasal steroid to try & shrink the polyps first. My understanding from my CF ENT is that chances of a CFer having polyps grow back is high so nasal sprays should be attempted before surgery.

THAT being said.......even tho your son is having problems with doing the PFT there still seems to be a decline. Is he doing CPT in addition to exercise?

Although exercise is fantastic....CPT/Nebs loosen & help get the junk ready to be coughed up & out hence making the exercise even more rewarding. Once the small airways are plugged...it takes a lot more work to get them clear. A lot more work then the larger airways.

I am sorry things didnt go as well as you hoped.

 

[JazzysMom]

I would ask for a nasal steroid to try & shrink the polyps first. My understanding from my CF ENT is that chances of a CFer having polyps grow back is high so nasal sprays should be attempted before surgery.
<br />
<br />THAT being said.......even tho your son is having problems with doing the PFT there still seems to be a decline. Is he doing CPT in addition to exercise?
<br />
<br />Although exercise is fantastic....CPT/Nebs loosen & help get the junk ready to be coughed up & out hence making the exercise even more rewarding. Once the small airways are plugged...it takes a lot more work to get them clear. A lot more work then the larger airways.
<br />
<br />I am sorry things didnt go as well as you hoped.