First Post

[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

 

[JazzysMom]

I understand what you are looking for now. Just please rememeber that whatever your clinic does doesnt mean its the same thoughts. The only REAL standard is the guidelines issued by the CFF with regards to frequency of pfts, x rays etc. The rest is based on doctors & patients! It would be best to get the ?? you are looking for answered by your doctors since that is who/where it would come from.

 

[JazzysMom]

I understand what you are looking for now. Just please rememeber that whatever your clinic does doesnt mean its the same thoughts. The only REAL standard is the guidelines issued by the CFF with regards to frequency of pfts, x rays etc. The rest is based on doctors & patients! It would be best to get the ?? you are looking for answered by your doctors since that is who/where it would come from.

 

[JazzysMom]

I understand what you are looking for now. Just please rememeber that whatever your clinic does doesnt mean its the same thoughts. The only REAL standard is the guidelines issued by the CFF with regards to frequency of pfts, x rays etc. The rest is based on doctors & patients! It would be best to get the ?? you are looking for answered by your doctors since that is who/where it would come from.

 

[Rebjane]

This post is for the mom asking how she will know if her daugher with CF is getting sick. Alot of care for a CF'er is preventative. Even if your cf'er isn't sick or isn't culturing anything, there are certain things we do to keep them healthy, chest pt or VEST, nebs, depending on what your CF doc prefers to use pulmozyme or hypertonic saline or both. Cf care is individual, too. Not all treatments work for each CF'er the same. We get sputum cultures on Maggie about every 3 months or if she's coughing to see what anti is appropriate. Certain things cue me in that she gettting a "flare-up" coughing at night, weight loss, decrease appetite, loooking tired, rings around her eyes. The important thing is not to wait if your child is acting sick. I don't mean I run to the doctor with every cough, but I will call and speak about my concerns. Most times, our doc will order something over the phone, especially if he already has a recnt sputum culture. We'll up Maggie's treatments if she 's coughing or has a bad cold. Also, Maggie's nursery school teachers are good about passing info on about what illnessess are going around in school, like chicken pox, the flu, or bad upper resp viruses. HTH.

 

[Rebjane]

This post is for the mom asking how she will know if her daugher with CF is getting sick. Alot of care for a CF'er is preventative. Even if your cf'er isn't sick or isn't culturing anything, there are certain things we do to keep them healthy, chest pt or VEST, nebs, depending on what your CF doc prefers to use pulmozyme or hypertonic saline or both. Cf care is individual, too. Not all treatments work for each CF'er the same. We get sputum cultures on Maggie about every 3 months or if she's coughing to see what anti is appropriate. Certain things cue me in that she gettting a "flare-up" coughing at night, weight loss, decrease appetite, loooking tired, rings around her eyes. The important thing is not to wait if your child is acting sick. I don't mean I run to the doctor with every cough, but I will call and speak about my concerns. Most times, our doc will order something over the phone, especially if he already has a recnt sputum culture. We'll up Maggie's treatments if she 's coughing or has a bad cold. Also, Maggie's nursery school teachers are good about passing info on about what illnessess are going around in school, like chicken pox, the flu, or bad upper resp viruses. HTH.

 

[Rebjane]

This post is for the mom asking how she will know if her daugher with CF is getting sick. Alot of care for a CF'er is preventative. Even if your cf'er isn't sick or isn't culturing anything, there are certain things we do to keep them healthy, chest pt or VEST, nebs, depending on what your CF doc prefers to use pulmozyme or hypertonic saline or both. Cf care is individual, too. Not all treatments work for each CF'er the same. We get sputum cultures on Maggie about every 3 months or if she's coughing to see what anti is appropriate. Certain things cue me in that she gettting a "flare-up" coughing at night, weight loss, decrease appetite, loooking tired, rings around her eyes. The important thing is not to wait if your child is acting sick. I don't mean I run to the doctor with every cough, but I will call and speak about my concerns. Most times, our doc will order something over the phone, especially if he already has a recnt sputum culture. We'll up Maggie's treatments if she 's coughing or has a bad cold. Also, Maggie's nursery school teachers are good about passing info on about what illnessess are going around in school, like chicken pox, the flu, or bad upper resp viruses. HTH.

 

[kayleesgrandma]

Hello Gobae, welcome, and I hear you're a grandpa! I am highty involved in my granddaughter's care, I am the one who has done research and found this site. My daughter has not wanted to face the info about cystic fibrosis--kind of the ostrich syndrone. I finally got her to join the site, her site name is kayleessmile. Kaylee doesn't live with me, but it seems I have her and her brother all the time! So welcome to the site, it can be pretty interesting sometimes.

 

[kayleesgrandma]

Hello Gobae, welcome, and I hear you're a grandpa! I am highty involved in my granddaughter's care, I am the one who has done research and found this site. My daughter has not wanted to face the info about cystic fibrosis--kind of the ostrich syndrone. I finally got her to join the site, her site name is kayleessmile. Kaylee doesn't live with me, but it seems I have her and her brother all the time! So welcome to the site, it can be pretty interesting sometimes.

 

[kayleesgrandma]

Hello Gobae, welcome, and I hear you're a grandpa! I am highty involved in my granddaughter's care, I am the one who has done research and found this site. My daughter has not wanted to face the info about cystic fibrosis--kind of the ostrich syndrone. I finally got her to join the site, her site name is kayleessmile. Kaylee doesn't live with me, but it seems I have her and her brother all the time! So welcome to the site, it can be pretty interesting sometimes.

 

[Samsmom]

gobae (and kayleesgrandma) I commend you for being so concerned and involved in your grandchild's care. for gobae, my daughter was diagnosed last year at age 12 and I felt a lot like you, the sitting duck. I have finally realized that you can't wait for the sick times to show up, you just have to live and deal with those times when they come. There is no way to predict when or how often a child will get sick or how bad an illness will be. We are lucky because our daughter had mild lung disease at this time and mostly digestive issues. We take one day at a time and live like each day the best we can with the knowledge we have. Welcome aboard, this is a great place for support and answers to questions.

 

[Samsmom]

gobae (and kayleesgrandma) I commend you for being so concerned and involved in your grandchild's care. for gobae, my daughter was diagnosed last year at age 12 and I felt a lot like you, the sitting duck. I have finally realized that you can't wait for the sick times to show up, you just have to live and deal with those times when they come. There is no way to predict when or how often a child will get sick or how bad an illness will be. We are lucky because our daughter had mild lung disease at this time and mostly digestive issues. We take one day at a time and live like each day the best we can with the knowledge we have. Welcome aboard, this is a great place for support and answers to questions.

 

[Samsmom]

gobae (and kayleesgrandma) I commend you for being so concerned and involved in your grandchild's care. for gobae, my daughter was diagnosed last year at age 12 and I felt a lot like you, the sitting duck. I have finally realized that you can't wait for the sick times to show up, you just have to live and deal with those times when they come. There is no way to predict when or how often a child will get sick or how bad an illness will be. We are lucky because our daughter had mild lung disease at this time and mostly digestive issues. We take one day at a time and live like each day the best we can with the knowledge we have. Welcome aboard, this is a great place for support and answers to questions.