just found out

[rubiesmom]

We just found out that our 6yo daughter, Rubie, has cf. What a heartbreak the past few days have been, I still dont know much about cf but I'm hoping to learn more through all you wonderful people. Rubie is very tiny and only weighs 35lbs, she already has panceas failure and right now she has walking pneumonia. I've been through so many doctors and they all told me something different, first they said allergies, then asthma..the list goes on. It took us a long time to finally get the answer.
Shes taking zithromax right now for her pneumonia and shes being put on enzymes and a multi vitamin. We are in the process of getting her into a cf center, her GI doc is helping us with that. I'm so scared for her and I really dont know what is down the road for her. Her doc said that gene therapy will most likely be in rubies lifetime, has anyone heard about this before?
Should she be on a sp special diet? Is there anything I can do help her while we wait for the appointment with the cf center? She is such a happy child and is oblivious to what she has, how do you explain something like this to a little one? This is a nightmare. Any advice would be greatly appreciated..I still feel like I'm in the dark
God bless you all
mom to a beautiful girl w/cf

 

[rubiesmom]

We just found out that our 6yo daughter, Rubie, has cf. What a heartbreak the past few days have been, I still dont know much about cf but I'm hoping to learn more through all you wonderful people. Rubie is very tiny and only weighs 35lbs, she already has panceas failure and right now she has walking pneumonia. I've been through so many doctors and they all told me something different, first they said allergies, then asthma..the list goes on. It took us a long time to finally get the answer.
Shes taking zithromax right now for her pneumonia and shes being put on enzymes and a multi vitamin. We are in the process of getting her into a cf center, her GI doc is helping us with that. I'm so scared for her and I really dont know what is down the road for her. Her doc said that gene therapy will most likely be in rubies lifetime, has anyone heard about this before?
Should she be on a sp special diet? Is there anything I can do help her while we wait for the appointment with the cf center? She is such a happy child and is oblivious to what she has, how do you explain something like this to a little one? This is a nightmare. Any advice would be greatly appreciated..I still feel like I'm in the dark
God bless you all
mom to a beautiful girl w/cf

 

[rubiesmom]

We just found out that our 6yo daughter, Rubie, has cf. What a heartbreak the past few days have been, I still dont know much about cf but I'm hoping to learn more through all you wonderful people. Rubie is very tiny and only weighs 35lbs, she already has panceas failure and right now she has walking pneumonia. I've been through so many doctors and they all told me something different, first they said allergies, then asthma..the list goes on. It took us a long time to finally get the answer.
Shes taking zithromax right now for her pneumonia and shes being put on enzymes and a multi vitamin. We are in the process of getting her into a cf center, her GI doc is helping us with that. I'm so scared for her and I really dont know what is down the road for her. Her doc said that gene therapy will most likely be in rubies lifetime, has anyone heard about this before?
Should she be on a sp special diet? Is there anything I can do help her while we wait for the appointment with the cf center? She is such a happy child and is oblivious to what she has, how do you explain something like this to a little one? This is a nightmare. Any advice would be greatly appreciated..I still feel like I'm in the dark
God bless you all
mom to a beautiful girl w/cf

 

[Rebjane]

Rubiesmom,

I'm sorry about your daughter's diagnosis. The good thing is now that you know it is CF you will see a doctor who specializes in cystic fibrosis and your daughter will get the medicines and treatments she needs and she may start to feel better and grow. Try to stay strong. Keep asking questions. Knowledge is power. Get a notebook and write down all your questions for the doctors and CF doctors. There is alot of information about CF out there that is outdated and inaccurate so be careful when researching about CF. A reliable source of information comes from the Cystic Fibrosis Foundation, there website is www.cff.org Alot of things we do for our children with CF have to do with"airway clearance" or chest physical therapy, the clapping on the back which helps loosen up mucus and prevents infection. Some children including mine have a device called the VEST, it is a machine that vibrates the child 's chest to loosen mucus. We also do breathing treatments to keep her lungs clear. We also give our daughter pancreatic enzymes with food to help her absorb nutrients. Alot of CF'ers are on a high calorie, nutrient rich diet as well as high fat. CF is very individual so your child's doctor will decide what is best for her.

This site is a good place for support and info. Always ask questions. It's ok to be mad, angry sad for your daughter. We've been there.

 

[Rebjane]

Rubiesmom,

I'm sorry about your daughter's diagnosis. The good thing is now that you know it is CF you will see a doctor who specializes in cystic fibrosis and your daughter will get the medicines and treatments she needs and she may start to feel better and grow. Try to stay strong. Keep asking questions. Knowledge is power. Get a notebook and write down all your questions for the doctors and CF doctors. There is alot of information about CF out there that is outdated and inaccurate so be careful when researching about CF. A reliable source of information comes from the Cystic Fibrosis Foundation, there website is www.cff.org Alot of things we do for our children with CF have to do with"airway clearance" or chest physical therapy, the clapping on the back which helps loosen up mucus and prevents infection. Some children including mine have a device called the VEST, it is a machine that vibrates the child 's chest to loosen mucus. We also do breathing treatments to keep her lungs clear. We also give our daughter pancreatic enzymes with food to help her absorb nutrients. Alot of CF'ers are on a high calorie, nutrient rich diet as well as high fat. CF is very individual so your child's doctor will decide what is best for her.

This site is a good place for support and info. Always ask questions. It's ok to be mad, angry sad for your daughter. We've been there.

 

[Rebjane]

Rubiesmom,

I'm sorry about your daughter's diagnosis. The good thing is now that you know it is CF you will see a doctor who specializes in cystic fibrosis and your daughter will get the medicines and treatments she needs and she may start to feel better and grow. Try to stay strong. Keep asking questions. Knowledge is power. Get a notebook and write down all your questions for the doctors and CF doctors. There is alot of information about CF out there that is outdated and inaccurate so be careful when researching about CF. A reliable source of information comes from the Cystic Fibrosis Foundation, there website is www.cff.org Alot of things we do for our children with CF have to do with"airway clearance" or chest physical therapy, the clapping on the back which helps loosen up mucus and prevents infection. Some children including mine have a device called the VEST, it is a machine that vibrates the child 's chest to loosen mucus. We also do breathing treatments to keep her lungs clear. We also give our daughter pancreatic enzymes with food to help her absorb nutrients. Alot of CF'ers are on a high calorie, nutrient rich diet as well as high fat. CF is very individual so your child's doctor will decide what is best for her.

This site is a good place for support and info. Always ask questions. It's ok to be mad, angry sad for your daughter. We've been there.

 

[tammykrumrey]

Rubiesmom,
I too am sorry that you are having to go through all of this. It is so difficult when you are in the dark and don't have all the answers that you need. Your CF clinic will be a great help to you and Rubie.
It sounds like it has been a nightmare trying to find out what is wrong with your baby (even at 6 they are still our babies<img src="i/expressions/face-icon-small-smile.gif" border="0">) But now that you know, you can start getting her what she needs to get healthy! You will start feeling better as she starts showing signs of improvement!
Please come here when you need a shoulder to lean on! We all do know what you are going through!

 

[tammykrumrey]

Rubiesmom,
I too am sorry that you are having to go through all of this. It is so difficult when you are in the dark and don't have all the answers that you need. Your CF clinic will be a great help to you and Rubie.
It sounds like it has been a nightmare trying to find out what is wrong with your baby (even at 6 they are still our babies<img src="i/expressions/face-icon-small-smile.gif" border="0">) But now that you know, you can start getting her what she needs to get healthy! You will start feeling better as she starts showing signs of improvement!
Please come here when you need a shoulder to lean on! We all do know what you are going through!

 

[tammykrumrey]

Rubiesmom,
I too am sorry that you are having to go through all of this. It is so difficult when you are in the dark and don't have all the answers that you need. Your CF clinic will be a great help to you and Rubie.
It sounds like it has been a nightmare trying to find out what is wrong with your baby (even at 6 they are still our babies<img src="i/expressions/face-icon-small-smile.gif" border="0">) But now that you know, you can start getting her what she needs to get healthy! You will start feeling better as she starts showing signs of improvement!
Please come here when you need a shoulder to lean on! We all do know what you are going through!

 

[rubiesmom]

Thank you rebjane and tammykrumrey for your advice and support, it helps to hear from people who have been through the same thing our family is going through. I don't know anyone who has cf or even someone with a loved one who has it, so I didnt know where to turn. This site is a comfort to me. I have never felt so helpless in my life, I just hope she'll be able to get the treatment she needs and on the road to better health as soon as possible. Can people with cf live normal lives, will her childhood be fun for her at all? How did she get this evil disease when neither me or her father have it? Should I get tested too? My heart goes out to you both and your children.

 

[rubiesmom]

Thank you rebjane and tammykrumrey for your advice and support, it helps to hear from people who have been through the same thing our family is going through. I don't know anyone who has cf or even someone with a loved one who has it, so I didnt know where to turn. This site is a comfort to me. I have never felt so helpless in my life, I just hope she'll be able to get the treatment she needs and on the road to better health as soon as possible. Can people with cf live normal lives, will her childhood be fun for her at all? How did she get this evil disease when neither me or her father have it? Should I get tested too? My heart goes out to you both and your children.

 

[rubiesmom]

Thank you rebjane and tammykrumrey for your advice and support, it helps to hear from people who have been through the same thing our family is going through. I don't know anyone who has cf or even someone with a loved one who has it, so I didnt know where to turn. This site is a comfort to me. I have never felt so helpless in my life, I just hope she'll be able to get the treatment she needs and on the road to better health as soon as possible. Can people with cf live normal lives, will her childhood be fun for her at all? How did she get this evil disease when neither me or her father have it? Should I get tested too? My heart goes out to you both and your children.

 

[eli]

Hi Rubiesmom, im very sorry to hear that you daughter has been diagnosed with this evil illness.

I'm sorry, i don't have too much time on my hands at the moment to explain our story but i jsut wanted to quickly respond to you.

Just know that you are not alone, and that there are many great people on this site that will be of big help and support along thway.
As for your dd living a normal life, its very possible these days with the advancement of trreatments. Although there are many that live a normal life, but difficult life. We only hope for more treatment advancements in the future.
Also her childhood will be fun as long as you make it fun, just let her be a normal 6 yr old as well as making sure she does all her treatments to saty healthy.

She got this "evil disease", because you and her father are carriers of the cf gene, which means every time you have a child they have a 1 in 4 chance of having CF. That child needs to have 2 copies like what Ruby has t have cf.

I will PM, when i get the chance and explain more late.

Take care

 

[eli]

Hi Rubiesmom, im very sorry to hear that you daughter has been diagnosed with this evil illness.

I'm sorry, i don't have too much time on my hands at the moment to explain our story but i jsut wanted to quickly respond to you.

Just know that you are not alone, and that there are many great people on this site that will be of big help and support along thway.
As for your dd living a normal life, its very possible these days with the advancement of trreatments. Although there are many that live a normal life, but difficult life. We only hope for more treatment advancements in the future.
Also her childhood will be fun as long as you make it fun, just let her be a normal 6 yr old as well as making sure she does all her treatments to saty healthy.

She got this "evil disease", because you and her father are carriers of the cf gene, which means every time you have a child they have a 1 in 4 chance of having CF. That child needs to have 2 copies like what Ruby has t have cf.

I will PM, when i get the chance and explain more late.

Take care

 

[eli]

Hi Rubiesmom, im very sorry to hear that you daughter has been diagnosed with this evil illness.

I'm sorry, i don't have too much time on my hands at the moment to explain our story but i jsut wanted to quickly respond to you.

Just know that you are not alone, and that there are many great people on this site that will be of big help and support along thway.
As for your dd living a normal life, its very possible these days with the advancement of trreatments. Although there are many that live a normal life, but difficult life. We only hope for more treatment advancements in the future.
Also her childhood will be fun as long as you make it fun, just let her be a normal 6 yr old as well as making sure she does all her treatments to saty healthy.

She got this "evil disease", because you and her father are carriers of the cf gene, which means every time you have a child they have a 1 in 4 chance of having CF. That child needs to have 2 copies like what Ruby has t have cf.

I will PM, when i get the chance and explain more late.

Take care

 

[Rebjane]

Rubiesmom,

As Eli explained Cystic fibrosis is genetic. It is not your fault your child has CF. Our family has no history of CF that we know of, except of course our daughter. But my husband and i are both carriers for the CF mutation. Our daughter got one copy of the CF gene from me and one from my husband. Thus she has CF. For each child you have there is a 1 in4 chance of them having CF. The goal for people with CF is to try to live as normal a life as possible. My daughter goes to nursery school, ballet class, birthday partys, she has good litttel friends. We have adjusted our schedule and fit her treatments and VEST therapy around all the other daily things we do in life. Our personal choice is to be open with people about Maggie's CF. Some people are more private. It's a choice, We do not hide her CF. Our freinds and family are aware. When her friends come over they could care less about the enzymes Maggie takes. If Maggie is due for a treatments when friends are over, I plan it when they have"down time" and they watch TV together and sit and chat while Maggie has a breathing treatment or Vest treatment. Maggie is outgoing and fun so there really is no holding her back. Of course there will be times when she is sick and may miss school but we'll cross that bridge when we get there. Life is flexible.

 

[Rebjane]

Rubiesmom,

As Eli explained Cystic fibrosis is genetic. It is not your fault your child has CF. Our family has no history of CF that we know of, except of course our daughter. But my husband and i are both carriers for the CF mutation. Our daughter got one copy of the CF gene from me and one from my husband. Thus she has CF. For each child you have there is a 1 in4 chance of them having CF. The goal for people with CF is to try to live as normal a life as possible. My daughter goes to nursery school, ballet class, birthday partys, she has good litttel friends. We have adjusted our schedule and fit her treatments and VEST therapy around all the other daily things we do in life. Our personal choice is to be open with people about Maggie's CF. Some people are more private. It's a choice, We do not hide her CF. Our freinds and family are aware. When her friends come over they could care less about the enzymes Maggie takes. If Maggie is due for a treatments when friends are over, I plan it when they have"down time" and they watch TV together and sit and chat while Maggie has a breathing treatment or Vest treatment. Maggie is outgoing and fun so there really is no holding her back. Of course there will be times when she is sick and may miss school but we'll cross that bridge when we get there. Life is flexible.

 

[Rebjane]

Rubiesmom,

As Eli explained Cystic fibrosis is genetic. It is not your fault your child has CF. Our family has no history of CF that we know of, except of course our daughter. But my husband and i are both carriers for the CF mutation. Our daughter got one copy of the CF gene from me and one from my husband. Thus she has CF. For each child you have there is a 1 in4 chance of them having CF. The goal for people with CF is to try to live as normal a life as possible. My daughter goes to nursery school, ballet class, birthday partys, she has good litttel friends. We have adjusted our schedule and fit her treatments and VEST therapy around all the other daily things we do in life. Our personal choice is to be open with people about Maggie's CF. Some people are more private. It's a choice, We do not hide her CF. Our freinds and family are aware. When her friends come over they could care less about the enzymes Maggie takes. If Maggie is due for a treatments when friends are over, I plan it when they have"down time" and they watch TV together and sit and chat while Maggie has a breathing treatment or Vest treatment. Maggie is outgoing and fun so there really is no holding her back. Of course there will be times when she is sick and may miss school but we'll cross that bridge when we get there. Life is flexible.

 

[tammykrumrey]

I can say that our children lead a very normal life. They do go to school (we have a 504 plan in place to help with some things such as unlimited bathroom usuage, making up homework when ill, etc.) Both girls are straight A students, and do not miss a lot of school. They are cheerleaders, they dance. They sing in the choir. They have no limits. When they are fighting an infection, they tend to slow down a bit, but that's ok. We work with it and get them back up to where they were.

And we are the same as Rebecca when it comes to letting people know about CF. We do not hide it. I don't want my girls to be ashamed of having CF. It is part of who they are (and we are as a family). And I explain CF to my kids as they ask questions. And I answer the questions in a way that's appropriate for their age. They do know that they will always have it. They used to think that when they grew up it would be gone because they don't know any adults with it. But they understand how important it is to do the things that our CF doctor tells them to do in order to stay healthy and live longer.

Please ask away if you have anymore questions.

I didn't answer about how she got CF because the others have already answered that for you<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[tammykrumrey]

I can say that our children lead a very normal life. They do go to school (we have a 504 plan in place to help with some things such as unlimited bathroom usuage, making up homework when ill, etc.) Both girls are straight A students, and do not miss a lot of school. They are cheerleaders, they dance. They sing in the choir. They have no limits. When they are fighting an infection, they tend to slow down a bit, but that's ok. We work with it and get them back up to where they were.

And we are the same as Rebecca when it comes to letting people know about CF. We do not hide it. I don't want my girls to be ashamed of having CF. It is part of who they are (and we are as a family). And I explain CF to my kids as they ask questions. And I answer the questions in a way that's appropriate for their age. They do know that they will always have it. They used to think that when they grew up it would be gone because they don't know any adults with it. But they understand how important it is to do the things that our CF doctor tells them to do in order to stay healthy and live longer.

Please ask away if you have anymore questions.

I didn't answer about how she got CF because the others have already answered that for you<img src="i/expressions/face-icon-small-smile.gif" border="0">