What do you do for treatments and when did you start?

H

humphrey711

New member
Hi All,
First let me say I am so happy I found this board. I have learned so much about how families are dealing with CF.

My daughter is 2 and currently only takes vitamins, enzymes, and we do manual chest pt almost daily. At this point she has not cultured anything other than staph. When did you child first culture something nasty and when did you begin nebs? What meds do you currently use in your nebs? Did you do nebs before any nasty cultures? I often wonder if we should start her on nebs even though she doesn't need them yet for the bad bacteria.

Your thoughts are appreciated.

Thanks,
Karen
 
H

humphrey711

New member
Hi All,
First let me say I am so happy I found this board. I have learned so much about how families are dealing with CF.

My daughter is 2 and currently only takes vitamins, enzymes, and we do manual chest pt almost daily. At this point she has not cultured anything other than staph. When did you child first culture something nasty and when did you begin nebs? What meds do you currently use in your nebs? Did you do nebs before any nasty cultures? I often wonder if we should start her on nebs even though she doesn't need them yet for the bad bacteria.

Your thoughts are appreciated.

Thanks,
Karen
 
H

humphrey711

New member
Hi All,
First let me say I am so happy I found this board. I have learned so much about how families are dealing with CF.

My daughter is 2 and currently only takes vitamins, enzymes, and we do manual chest pt almost daily. At this point she has not cultured anything other than staph. When did you child first culture something nasty and when did you begin nebs? What meds do you currently use in your nebs? Did you do nebs before any nasty cultures? I often wonder if we should start her on nebs even though she doesn't need them yet for the bad bacteria.

Your thoughts are appreciated.

Thanks,
Karen
 
H

humphrey711

New member
Hi All,
First let me say I am so happy I found this board. I have learned so much about how families are dealing with CF.

My daughter is 2 and currently only takes vitamins, enzymes, and we do manual chest pt almost daily. At this point she has not cultured anything other than staph. When did you child first culture something nasty and when did you begin nebs? What meds do you currently use in your nebs? Did you do nebs before any nasty cultures? I often wonder if we should start her on nebs even though she doesn't need them yet for the bad bacteria.

Your thoughts are appreciated.

Thanks,
Karen
 
H

humphrey711

New member
Hi All,
<br />First let me say I am so happy I found this board. I have learned so much about how families are dealing with CF.
<br />
<br />My daughter is 2 and currently only takes vitamins, enzymes, and we do manual chest pt almost daily. At this point she has not cultured anything other than staph. When did you child first culture something nasty and when did you begin nebs? What meds do you currently use in your nebs? Did you do nebs before any nasty cultures? I often wonder if we should start her on nebs even though she doesn't need them yet for the bad bacteria.
<br />
<br />Your thoughts are appreciated.
<br />
<br />Thanks,
<br />Karen
 
C

crickit715

New member
we started on nebs at 3 weeks old, pulmozyme and xoepenex (hypertonic saline) was added at about 2 months. unfortunatley my daughter cultured pseudomonas in january. i know there is a bit of controversy with doc's over whether to start pulmozyme early but i was under the assumption most cf patients received some form of "albuterol, hypertonic saline stuff" early in treatment, but i could be wrong on that. im sure you will get alot of answers! God bless. ricki
 
C

crickit715

New member
we started on nebs at 3 weeks old, pulmozyme and xoepenex (hypertonic saline) was added at about 2 months. unfortunatley my daughter cultured pseudomonas in january. i know there is a bit of controversy with doc's over whether to start pulmozyme early but i was under the assumption most cf patients received some form of "albuterol, hypertonic saline stuff" early in treatment, but i could be wrong on that. im sure you will get alot of answers! God bless. ricki
 
C

crickit715

New member
we started on nebs at 3 weeks old, pulmozyme and xoepenex (hypertonic saline) was added at about 2 months. unfortunatley my daughter cultured pseudomonas in january. i know there is a bit of controversy with doc's over whether to start pulmozyme early but i was under the assumption most cf patients received some form of "albuterol, hypertonic saline stuff" early in treatment, but i could be wrong on that. im sure you will get alot of answers! God bless. ricki
 
C

crickit715

New member
we started on nebs at 3 weeks old, pulmozyme and xoepenex (hypertonic saline) was added at about 2 months. unfortunatley my daughter cultured pseudomonas in january. i know there is a bit of controversy with doc's over whether to start pulmozyme early but i was under the assumption most cf patients received some form of "albuterol, hypertonic saline stuff" early in treatment, but i could be wrong on that. im sure you will get alot of answers! God bless. ricki
 
C

crickit715

New member
we started on nebs at 3 weeks old, pulmozyme and xoepenex (hypertonic saline) was added at about 2 months. unfortunatley my daughter cultured pseudomonas in january. i know there is a bit of controversy with doc's over whether to start pulmozyme early but i was under the assumption most cf patients received some form of "albuterol, hypertonic saline stuff" early in treatment, but i could be wrong on that. im sure you will get alot of answers! God bless. ricki
 
M

Mommafirst

Guest
My daughter is three. We do albuterol, but we use an inhaler instead of a neb. We use it to open her airways before doing the vest or manual PT. I really thought that this was something all CF kids should do, regardless of their cultures.

My daughter also only cultures staph. We trialed pulmozyme nebs for 8 months last year. Since she has no mucus or cough normally, the pulmozyme did nothing. We decided to hold off another year or two so that we aren't hitting our insurance lifetime cap at $2000 a month for something that isn't doing anything. We will re-evaluate when she turns 4, as that is the typical age our clinic starts kids on pulmozyme.
 
M

Mommafirst

Guest
My daughter is three. We do albuterol, but we use an inhaler instead of a neb. We use it to open her airways before doing the vest or manual PT. I really thought that this was something all CF kids should do, regardless of their cultures.

My daughter also only cultures staph. We trialed pulmozyme nebs for 8 months last year. Since she has no mucus or cough normally, the pulmozyme did nothing. We decided to hold off another year or two so that we aren't hitting our insurance lifetime cap at $2000 a month for something that isn't doing anything. We will re-evaluate when she turns 4, as that is the typical age our clinic starts kids on pulmozyme.
 
M

Mommafirst

Guest
My daughter is three. We do albuterol, but we use an inhaler instead of a neb. We use it to open her airways before doing the vest or manual PT. I really thought that this was something all CF kids should do, regardless of their cultures.

My daughter also only cultures staph. We trialed pulmozyme nebs for 8 months last year. Since she has no mucus or cough normally, the pulmozyme did nothing. We decided to hold off another year or two so that we aren't hitting our insurance lifetime cap at $2000 a month for something that isn't doing anything. We will re-evaluate when she turns 4, as that is the typical age our clinic starts kids on pulmozyme.
 
M

Mommafirst

Guest
My daughter is three. We do albuterol, but we use an inhaler instead of a neb. We use it to open her airways before doing the vest or manual PT. I really thought that this was something all CF kids should do, regardless of their cultures.

My daughter also only cultures staph. We trialed pulmozyme nebs for 8 months last year. Since she has no mucus or cough normally, the pulmozyme did nothing. We decided to hold off another year or two so that we aren't hitting our insurance lifetime cap at $2000 a month for something that isn't doing anything. We will re-evaluate when she turns 4, as that is the typical age our clinic starts kids on pulmozyme.
 
M

Mommafirst

Guest
My daughter is three. We do albuterol, but we use an inhaler instead of a neb. We use it to open her airways before doing the vest or manual PT. I really thought that this was something all CF kids should do, regardless of their cultures.
<br />
<br />My daughter also only cultures staph. We trialed pulmozyme nebs for 8 months last year. Since she has no mucus or cough normally, the pulmozyme did nothing. We decided to hold off another year or two so that we aren't hitting our insurance lifetime cap at $2000 a month for something that isn't doing anything. We will re-evaluate when she turns 4, as that is the typical age our clinic starts kids on pulmozyme.
 
R

Rebjane

Super Moderator
We started Chest PT at a few days old... We did not start albuterol til she was 2 years old; she was getting sick alot before that..Layered in pulmozyme at 2 1/2.. CF docs have different philosophys but the one I am using is preserving healthy lungs for as long as possible. We now use Hypertonic saline(started around 4 years old after trying it out at clinic) As well as pulmicort nebs, my daughter has alot of inflammtion issues with CF. It's alot of nebs; 6 a day every day...her PFT's have been above 100% for the most part.
 
R

Rebjane

Super Moderator
We started Chest PT at a few days old... We did not start albuterol til she was 2 years old; she was getting sick alot before that..Layered in pulmozyme at 2 1/2.. CF docs have different philosophys but the one I am using is preserving healthy lungs for as long as possible. We now use Hypertonic saline(started around 4 years old after trying it out at clinic) As well as pulmicort nebs, my daughter has alot of inflammtion issues with CF. It's alot of nebs; 6 a day every day...her PFT's have been above 100% for the most part.
 
R

Rebjane

Super Moderator
We started Chest PT at a few days old... We did not start albuterol til she was 2 years old; she was getting sick alot before that..Layered in pulmozyme at 2 1/2.. CF docs have different philosophys but the one I am using is preserving healthy lungs for as long as possible. We now use Hypertonic saline(started around 4 years old after trying it out at clinic) As well as pulmicort nebs, my daughter has alot of inflammtion issues with CF. It's alot of nebs; 6 a day every day...her PFT's have been above 100% for the most part.
 
R

Rebjane

Super Moderator
We started Chest PT at a few days old... We did not start albuterol til she was 2 years old; she was getting sick alot before that..Layered in pulmozyme at 2 1/2.. CF docs have different philosophys but the one I am using is preserving healthy lungs for as long as possible. We now use Hypertonic saline(started around 4 years old after trying it out at clinic) As well as pulmicort nebs, my daughter has alot of inflammtion issues with CF. It's alot of nebs; 6 a day every day...her PFT's have been above 100% for the most part.
 
R

Rebjane

Super Moderator
We started Chest PT at a few days old... We did not start albuterol til she was 2 years old; she was getting sick alot before that..Layered in pulmozyme at 2 1/2.. CF docs have different philosophys but the one I am using is preserving healthy lungs for as long as possible. We now use Hypertonic saline(started around 4 years old after trying it out at clinic) As well as pulmicort nebs, my daughter has alot of inflammtion issues with CF. It's alot of nebs; 6 a day every day...her PFT's have been above 100% for the most part.
 
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