First Post

[Gobae]

I first heard about this board from the interview done on the Jerry Cahill podcast, so I decided to stop in and take a look around.

I don't know how many other grandparents are the primary caregivers for their CF relatives, but since our daughter and granddaughter (Keira) live with us, we're as involved with her care as her mother (Paige).

We got very luck when Keira was born. As it turns out NY is one of 7 states that has manditory newborn CF testing; so we knew Keira had it when she was 3 weeks old.

We've also been very pleased with the level of care our CF center has given. They've made sure to include ALL of the family in understanding the health care Keira needs and have answered all of our questions.

So far Keira is doing fantastic, we simply follow her med regimen and she has responded nicely; even when she had pseudomonas.

Best wishes to everyone!

 

[Gobae]

I first heard about this board from the interview done on the Jerry Cahill podcast, so I decided to stop in and take a look around.

I don't know how many other grandparents are the primary caregivers for their CF relatives, but since our daughter and granddaughter (Keira) live with us, we're as involved with her care as her mother (Paige).

We got very luck when Keira was born. As it turns out NY is one of 7 states that has manditory newborn CF testing; so we knew Keira had it when she was 3 weeks old.

We've also been very pleased with the level of care our CF center has given. They've made sure to include ALL of the family in understanding the health care Keira needs and have answered all of our questions.

So far Keira is doing fantastic, we simply follow her med regimen and she has responded nicely; even when she had pseudomonas.

Best wishes to everyone!

 

[Gobae]

I first heard about this board from the interview done on the Jerry Cahill podcast, so I decided to stop in and take a look around.

I don't know how many other grandparents are the primary caregivers for their CF relatives, but since our daughter and granddaughter (Keira) live with us, we're as involved with her care as her mother (Paige).

We got very luck when Keira was born. As it turns out NY is one of 7 states that has manditory newborn CF testing; so we knew Keira had it when she was 3 weeks old.

We've also been very pleased with the level of care our CF center has given. They've made sure to include ALL of the family in understanding the health care Keira needs and have answered all of our questions.

So far Keira is doing fantastic, we simply follow her med regimen and she has responded nicely; even when she had pseudomonas.

Best wishes to everyone!

 

[JazzysMom]

Welcome Aboard. THe one grandma that comes to mind immediately is Terri. Her username is KAYLEESGRANDMA. I am sure she will jump on the chance to swap notes with a new grandma who is involved in the CF care.

 

[JazzysMom]

Welcome Aboard. THe one grandma that comes to mind immediately is Terri. Her username is KAYLEESGRANDMA. I am sure she will jump on the chance to swap notes with a new grandma who is involved in the CF care.

 

[JazzysMom]

Welcome Aboard. THe one grandma that comes to mind immediately is Terri. Her username is KAYLEESGRANDMA. I am sure she will jump on the chance to swap notes with a new grandma who is involved in the CF care.

 

[maxjor]

This is my frist post to.i am new to this place and i wanted to know how to find out some things? like my little girl has cf and she is doing well right now and we have been very lucky with her but i am like a siting duck and want to know how long or about how long befor something happens?she is on some meds.i just want to know so i don t a slap in the face do you know what i mean?


thanks laurie


laurie mom of 2 one 7 with cf and one 5 no cf

 

[maxjor]

This is my frist post to.i am new to this place and i wanted to know how to find out some things? like my little girl has cf and she is doing well right now and we have been very lucky with her but i am like a siting duck and want to know how long or about how long befor something happens?she is on some meds.i just want to know so i don t a slap in the face do you know what i mean?


thanks laurie


laurie mom of 2 one 7 with cf and one 5 no cf

 

[maxjor]

This is my frist post to.i am new to this place and i wanted to know how to find out some things? like my little girl has cf and she is doing well right now and we have been very lucky with her but i am like a siting duck and want to know how long or about how long befor something happens?she is on some meds.i just want to know so i don t a slap in the face do you know what i mean?


thanks laurie


laurie mom of 2 one 7 with cf and one 5 no cf

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>maxjor</b></i>

This is my frist post to.i am new to this place and i wanted to know how to find out some things? like my little girl has cf and she is doing well right now and we have been very lucky with her but i am like a siting duck and want to know how long or about how long befor something happens?she is on some meds.i just want to know so i don t a slap in the face do you know what i mean?



thanks laurie

laurie mom of 2 one 7 with cf and one 5 no cf</end quote></div>

Unfortunately there is no way to know. Some people have been exposed to identical things as others and dont have a problem at all or until further in the future. SItting around like a duck isnt beneficial. It wont help you to help your daughter "live". You both will exist only in fear.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>maxjor</b></i>

This is my frist post to.i am new to this place and i wanted to know how to find out some things? like my little girl has cf and she is doing well right now and we have been very lucky with her but i am like a siting duck and want to know how long or about how long befor something happens?she is on some meds.i just want to know so i don t a slap in the face do you know what i mean?



thanks laurie

laurie mom of 2 one 7 with cf and one 5 no cf</end quote></div>

Unfortunately there is no way to know. Some people have been exposed to identical things as others and dont have a problem at all or until further in the future. SItting around like a duck isnt beneficial. It wont help you to help your daughter "live". You both will exist only in fear.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>maxjor</b></i>

This is my frist post to.i am new to this place and i wanted to know how to find out some things? like my little girl has cf and she is doing well right now and we have been very lucky with her but i am like a siting duck and want to know how long or about how long befor something happens?she is on some meds.i just want to know so i don t a slap in the face do you know what i mean?



thanks laurie

laurie mom of 2 one 7 with cf and one 5 no cf</end quote></div>

Unfortunately there is no way to know. Some people have been exposed to identical things as others and dont have a problem at all or until further in the future. SItting around like a duck isnt beneficial. It wont help you to help your daughter "live". You both will exist only in fear.

 

[maxjor]

I don't live in fear i just want to know what can happen befor it happens i know no one can tell me if she will get sick but i would like to know what can happen frist.how do you know if she is going down hill?for the frist she came winded is that the start of it?




thanks laurie

mom of 2 one 7 w/cf one 5 wo/cf

 

[maxjor]

I don't live in fear i just want to know what can happen befor it happens i know no one can tell me if she will get sick but i would like to know what can happen frist.how do you know if she is going down hill?for the frist she came winded is that the start of it?




thanks laurie

mom of 2 one 7 w/cf one 5 wo/cf

 

[maxjor]

I don't live in fear i just want to know what can happen befor it happens i know no one can tell me if she will get sick but i would like to know what can happen frist.how do you know if she is going down hill?for the frist she came winded is that the start of it?




thanks laurie

mom of 2 one 7 w/cf one 5 wo/cf

 

[JazzysMom]

Since its different for every CFer I will give you a general idea. Like any child there are certain things to watch for. Decrease in appetite is my #1 trigger often coninciding or before the increased cough & closed airways. Change in color or increase in sputum is a sure sign of things going in the wrong direction. Sometimes its difficult to know a common cold from a CF flareup. Sometimes you can get a common cold that may or may not lead to a CF flareup. Sadly you have to learn your child and know the signs. I didnt mean to insult you with the "living in fear" statement. I just know its hard with little ones and trying to grasp the CF stuff!

 

[JazzysMom]

Since its different for every CFer I will give you a general idea. Like any child there are certain things to watch for. Decrease in appetite is my #1 trigger often coninciding or before the increased cough & closed airways. Change in color or increase in sputum is a sure sign of things going in the wrong direction. Sometimes its difficult to know a common cold from a CF flareup. Sometimes you can get a common cold that may or may not lead to a CF flareup. Sadly you have to learn your child and know the signs. I didnt mean to insult you with the "living in fear" statement. I just know its hard with little ones and trying to grasp the CF stuff!

 

[JazzysMom]

Since its different for every CFer I will give you a general idea. Like any child there are certain things to watch for. Decrease in appetite is my #1 trigger often coninciding or before the increased cough & closed airways. Change in color or increase in sputum is a sure sign of things going in the wrong direction. Sometimes its difficult to know a common cold from a CF flareup. Sometimes you can get a common cold that may or may not lead to a CF flareup. Sadly you have to learn your child and know the signs. I didnt mean to insult you with the "living in fear" statement. I just know its hard with little ones and trying to grasp the CF stuff!

 

[Gobae]

What I would like to see, is some sort of chart or outline indicating what treatments are given for each increase in serverity. (Next time I'm at the Clinic I'm going to suggest this to their social worker).

Something like this:

Normal = Creon, PT, (percussive vest when older)
Mild = Antibiotics while even though patient is asymptomatic
Moderate = Additional/stronger/2nd course antibiotics "IV Therapy".
Severe = Lung transplant

Like I said I don't know what treatments past "Mild" would indicate a worsening condition (so I'm guessing). But this type of info would help put things in perspective.

A similar chart could be made for symptoms even though not all CF people are going to exhibit all the symptoms

 

[Gobae]

What I would like to see, is some sort of chart or outline indicating what treatments are given for each increase in serverity. (Next time I'm at the Clinic I'm going to suggest this to their social worker).

Something like this:

Normal = Creon, PT, (percussive vest when older)
Mild = Antibiotics while even though patient is asymptomatic
Moderate = Additional/stronger/2nd course antibiotics "IV Therapy".
Severe = Lung transplant

Like I said I don't know what treatments past "Mild" would indicate a worsening condition (so I'm guessing). But this type of info would help put things in perspective.

A similar chart could be made for symptoms even though not all CF people are going to exhibit all the symptoms