Rough few days...

  • Thread starter lemonstolemonade
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L

lemonstolemonade

Guest
Liza,

Thank you so much for that advice. We have a clinic appointment on the 13th. I called the clinic today to see if there was anything else we needed to do for DD before we see them on the 13th. They said no...only to bring the hospital test results and the discharge papers with me so they can have a copy. They also said that if the PCP hears anything on our check-up appointment on Wednesday to call, otherwise they will see us on the 13th.

I think that breathing treatments are going to be something we'll face for a while. Our toddler usually has to have them for about 3-4 week stretches during the winter months and she doesn't have CF.

I find that our dd does seem to cough things up better when I "beat" her on the back with my untrained CPT. : )

It will be interesting to see what happens on the 13th. She sounds a little rough today but I'm hoping it is just her trying to be productive getting it out.

I hope that everyone has a great week!

Emily
 
L

lemonstolemonade

Guest
Liza,

Thank you so much for that advice. We have a clinic appointment on the 13th. I called the clinic today to see if there was anything else we needed to do for DD before we see them on the 13th. They said no...only to bring the hospital test results and the discharge papers with me so they can have a copy. They also said that if the PCP hears anything on our check-up appointment on Wednesday to call, otherwise they will see us on the 13th.

I think that breathing treatments are going to be something we'll face for a while. Our toddler usually has to have them for about 3-4 week stretches during the winter months and she doesn't have CF.

I find that our dd does seem to cough things up better when I "beat" her on the back with my untrained CPT. : )

It will be interesting to see what happens on the 13th. She sounds a little rough today but I'm hoping it is just her trying to be productive getting it out.

I hope that everyone has a great week!

Emily
 
L

lemonstolemonade

Guest
Liza,

Thank you so much for that advice. We have a clinic appointment on the 13th. I called the clinic today to see if there was anything else we needed to do for DD before we see them on the 13th. They said no...only to bring the hospital test results and the discharge papers with me so they can have a copy. They also said that if the PCP hears anything on our check-up appointment on Wednesday to call, otherwise they will see us on the 13th.

I think that breathing treatments are going to be something we'll face for a while. Our toddler usually has to have them for about 3-4 week stretches during the winter months and she doesn't have CF.

I find that our dd does seem to cough things up better when I "beat" her on the back with my untrained CPT. : )

It will be interesting to see what happens on the 13th. She sounds a little rough today but I'm hoping it is just her trying to be productive getting it out.

I hope that everyone has a great week!

Emily
 
F

Foody

New member
So glad you are all home. There is just no better place to heal and rest. Sounds like she is going through it well. They really are resilent. Hope you are able to get some rest as well. Hang in there.
 
F

Foody

New member
So glad you are all home. There is just no better place to heal and rest. Sounds like she is going through it well. They really are resilent. Hope you are able to get some rest as well. Hang in there.
 
F

Foody

New member
So glad you are all home. There is just no better place to heal and rest. Sounds like she is going through it well. They really are resilent. Hope you are able to get some rest as well. Hang in there.
 
S

smilehs

New member
Hi!
Hope you are getting some much needed rest. This is my first time to this site and your blog sounds like my son. My jake is 21 months and has ear infections,croup,pneumonia since he was born. He most recent addition has been RSV which has now turned into double pneumonia again. I think my peditrician is great, but everytime I bring up CF he tells me I am being ridiculous. Do you have to go to a pulmonary doctor or can a peditrician diagnois CF? Any help would be great!

Thanks,
Heather
 
S

smilehs

New member
Hi!
Hope you are getting some much needed rest. This is my first time to this site and your blog sounds like my son. My jake is 21 months and has ear infections,croup,pneumonia since he was born. He most recent addition has been RSV which has now turned into double pneumonia again. I think my peditrician is great, but everytime I bring up CF he tells me I am being ridiculous. Do you have to go to a pulmonary doctor or can a peditrician diagnois CF? Any help would be great!

Thanks,
Heather
 
S

smilehs

New member
Hi!
Hope you are getting some much needed rest. This is my first time to this site and your blog sounds like my son. My jake is 21 months and has ear infections,croup,pneumonia since he was born. He most recent addition has been RSV which has now turned into double pneumonia again. I think my peditrician is great, but everytime I bring up CF he tells me I am being ridiculous. Do you have to go to a pulmonary doctor or can a peditrician diagnois CF? Any help would be great!

Thanks,
Heather
 
S

SuperRyan

New member
Hello

My pediatrician recommended that I go to a pulmonologist due to the fact that Ryan had an unresolved pneumonia when he was 9 months old. Thank God he made that recommendation early. At the time, my insurance required a referral so my pediatrician had to refer me to my current pulmonologist. Personally, I felt more comfortable tackling this issue with a pediatric pulmonologist because they are so familiar with CF.

I say if you are not getting the answers and guidance that you need from your pediatrician, then you need to find the answers elsewhere. I would start asking around about a good pulmonologist in your area.

Don't ever let anyone tell you that you are being ridiculous for the concerns that you are having about your child. You know him best and you can sense when something is not right. I would rather get all of the answers that I can. And if it turns out not to be CF then great but your pediatrician should at least be open to the idea of ruling it out rather than completely dismissing it.
Hope this helps <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

SuperRyan

New member
Hello

My pediatrician recommended that I go to a pulmonologist due to the fact that Ryan had an unresolved pneumonia when he was 9 months old. Thank God he made that recommendation early. At the time, my insurance required a referral so my pediatrician had to refer me to my current pulmonologist. Personally, I felt more comfortable tackling this issue with a pediatric pulmonologist because they are so familiar with CF.

I say if you are not getting the answers and guidance that you need from your pediatrician, then you need to find the answers elsewhere. I would start asking around about a good pulmonologist in your area.

Don't ever let anyone tell you that you are being ridiculous for the concerns that you are having about your child. You know him best and you can sense when something is not right. I would rather get all of the answers that I can. And if it turns out not to be CF then great but your pediatrician should at least be open to the idea of ruling it out rather than completely dismissing it.
Hope this helps <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

SuperRyan

New member
Hello

My pediatrician recommended that I go to a pulmonologist due to the fact that Ryan had an unresolved pneumonia when he was 9 months old. Thank God he made that recommendation early. At the time, my insurance required a referral so my pediatrician had to refer me to my current pulmonologist. Personally, I felt more comfortable tackling this issue with a pediatric pulmonologist because they are so familiar with CF.

I say if you are not getting the answers and guidance that you need from your pediatrician, then you need to find the answers elsewhere. I would start asking around about a good pulmonologist in your area.

Don't ever let anyone tell you that you are being ridiculous for the concerns that you are having about your child. You know him best and you can sense when something is not right. I would rather get all of the answers that I can. And if it turns out not to be CF then great but your pediatrician should at least be open to the idea of ruling it out rather than completely dismissing it.
Hope this helps <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
A friend of mine's granddaughter had RSV and a couple other upper respiratory infections. Their pediatrician said "let's do a test to rule out CF". She was diagnosed at 18 months.

Don't be afraid to speak up if you think there's something wrong with your child. You need to be proactive.
 
R

Ratatosk

Administrator
Staff member
A friend of mine's granddaughter had RSV and a couple other upper respiratory infections. Their pediatrician said "let's do a test to rule out CF". She was diagnosed at 18 months.

Don't be afraid to speak up if you think there's something wrong with your child. You need to be proactive.
 
R

Ratatosk

Administrator
Staff member
A friend of mine's granddaughter had RSV and a couple other upper respiratory infections. Their pediatrician said "let's do a test to rule out CF". She was diagnosed at 18 months.

Don't be afraid to speak up if you think there's something wrong with your child. You need to be proactive.
 
M

mtgreen30

New member
my son had lung issues since birth he was on vent for 6 months in nicu before being weaned to cpap then to oxygen. He was discharged home at 7 1/2 months home on oxygen, apena monitor, and suctioning of his lungs every 2 hours. His twin brother passed at 11 days because his lungs were so bad and scarred that the vent just wouldn't help. So I think everyone is different. My son is now 12 and still a pain in the butt! LOL
 
M

mtgreen30

New member
my son had lung issues since birth he was on vent for 6 months in nicu before being weaned to cpap then to oxygen. He was discharged home at 7 1/2 months home on oxygen, apena monitor, and suctioning of his lungs every 2 hours. His twin brother passed at 11 days because his lungs were so bad and scarred that the vent just wouldn't help. So I think everyone is different. My son is now 12 and still a pain in the butt! LOL
 
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