Looking for questions to ask and for friends

[imagine04]

Hey everyone.

Allow me to briefly introduce myself for those that did not catch my post in the Newly Diagnosed a few weeks back.

My son, Parker, was born on October 26, 2010. On 11/05/10 we found out that his NBS came back with one mutated gene so we went on 11/15/2010 for a sweat test. That came back positive with a chloride level of 111. The repeat sweat test on 11/19/10 was a level of 112 so definitely a positive diagnosis. We will have further gene testing done at a later date to determine what other gene he has but for now we know he carries the DF508 gene.

Looking back over what everyone has learned since your diagnosis or your little ones diagnosis what would your advice be on what questions to ask? I guess i don't want to always be asking the same questions at every clinic appt. and want to go in armed with questions that are very important to ask opposed to learning later that there was something i didn't ask that could help my son or us.

I'm still learning the terminology for CF so if you abbreviate things please then tell me what that abbreviation means <img src="i/expressions/face-icon-small-smile.gif" border="0">

And on a sidenote - if anyone is interested in friending me on Facebook, please do so! I am really looking to make some connections with other parents that have children with CF or adults that have CF. <a target=_blank class=ftalternatingbarlinklarge href="http://www.facebook.com/home.php?#!/profile.php?id=1244685523
">http://www.facebook.com/home.p...ile.php?id=1244685523
</a>
TIA everyone! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[imagine04]

Hey everyone.

Allow me to briefly introduce myself for those that did not catch my post in the Newly Diagnosed a few weeks back.

My son, Parker, was born on October 26, 2010. On 11/05/10 we found out that his NBS came back with one mutated gene so we went on 11/15/2010 for a sweat test. That came back positive with a chloride level of 111. The repeat sweat test on 11/19/10 was a level of 112 so definitely a positive diagnosis. We will have further gene testing done at a later date to determine what other gene he has but for now we know he carries the DF508 gene.

Looking back over what everyone has learned since your diagnosis or your little ones diagnosis what would your advice be on what questions to ask? I guess i don't want to always be asking the same questions at every clinic appt. and want to go in armed with questions that are very important to ask opposed to learning later that there was something i didn't ask that could help my son or us.

I'm still learning the terminology for CF so if you abbreviate things please then tell me what that abbreviation means <img src="i/expressions/face-icon-small-smile.gif" border="0">

And on a sidenote - if anyone is interested in friending me on Facebook, please do so! I am really looking to make some connections with other parents that have children with CF or adults that have CF. <a target=_blank class=ftalternatingbarlinklarge href="http://www.facebook.com/home.php?#!/profile.php?id=1244685523
">http://www.facebook.com/home.p...ile.php?id=1244685523
</a>
TIA everyone! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[imagine04]

Hey everyone.
<br />
<br /> Allow me to briefly introduce myself for those that did not catch my post in the Newly Diagnosed a few weeks back.
<br />
<br /> My son, Parker, was born on October 26, 2010. On 11/05/10 we found out that his NBS came back with one mutated gene so we went on 11/15/2010 for a sweat test. That came back positive with a chloride level of 111. The repeat sweat test on 11/19/10 was a level of 112 so definitely a positive diagnosis. We will have further gene testing done at a later date to determine what other gene he has but for now we know he carries the DF508 gene.
<br />
<br />Looking back over what everyone has learned since your diagnosis or your little ones diagnosis what would your advice be on what questions to ask? I guess i don't want to always be asking the same questions at every clinic appt. and want to go in armed with questions that are very important to ask opposed to learning later that there was something i didn't ask that could help my son or us.
<br />
<br />I'm still learning the terminology for CF so if you abbreviate things please then tell me what that abbreviation means <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />And on a sidenote - if anyone is interested in friending me on Facebook, please do so! I am really looking to make some connections with other parents that have children with CF or adults that have CF. <a target=_blank class=ftalternatingbarlinklarge href="http://www.facebook.com/home.php?#!/profile.php?id=1244685523
">http://www.facebook.com/home.p...ile.php?id=1244685523
</a><br />
<br />TIA everyone! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Mommafirst]

Congrats on your new arrival. I know that the pain of diagnosis can really overshadow the joy of your new baby, but do your best to enjoy him and the new life of motherhood. The love and joy you have awaiting you will far exceed the misery of this disease.

I don't know that there are a lot of questions that NEED to be asked right away. They will come up naturally, the more you learn, the more you know, the more questions you will have. As long as you learn how to give nebulizers and airway clearance (my daughter calls them pat pats) you will be well on your way.

I'll find you on Facebook!!!

 

[Mommafirst]

Congrats on your new arrival. I know that the pain of diagnosis can really overshadow the joy of your new baby, but do your best to enjoy him and the new life of motherhood. The love and joy you have awaiting you will far exceed the misery of this disease.

I don't know that there are a lot of questions that NEED to be asked right away. They will come up naturally, the more you learn, the more you know, the more questions you will have. As long as you learn how to give nebulizers and airway clearance (my daughter calls them pat pats) you will be well on your way.

I'll find you on Facebook!!!

 

[Mommafirst]

Congrats on your new arrival. I know that the pain of diagnosis can really overshadow the joy of your new baby, but do your best to enjoy him and the new life of motherhood. The love and joy you have awaiting you will far exceed the misery of this disease.
<br />
<br />I don't know that there are a lot of questions that NEED to be asked right away. They will come up naturally, the more you learn, the more you know, the more questions you will have. As long as you learn how to give nebulizers and airway clearance (my daughter calls them pat pats) you will be well on your way.
<br />
<br />I'll find you on Facebook!!!

 

[kellyga]

Sorry to hear about your son's diagnosis. It can be very overwhelming in the beginning. There is so much information to digest. It seems to be better if you can break it into small chunks. CF is a complex issue and effects each child so differently. It is difficult to figure out what you should focus on at first, because you don't know yet how your son's body will present CF.

We are almost 3 years in, and I think that one thing I can suggest is to focus on nutrition at first. He will definitely need his chest therapy (CPT), and you will need to start building his bubble to keep him away from all the germs, but it seemed like getting and keeping my daughters weight up was a big focus the first 2 years.

Body Mass Index (BMI) is directly correlated to lung function later in life. There are lots of tips and tricks to getting extra calories once they start baby food, and if he is taking enzymes, getting used to all that entails. Get to know your nutritionist.

 

[kellyga]

Sorry to hear about your son's diagnosis. It can be very overwhelming in the beginning. There is so much information to digest. It seems to be better if you can break it into small chunks. CF is a complex issue and effects each child so differently. It is difficult to figure out what you should focus on at first, because you don't know yet how your son's body will present CF.

We are almost 3 years in, and I think that one thing I can suggest is to focus on nutrition at first. He will definitely need his chest therapy (CPT), and you will need to start building his bubble to keep him away from all the germs, but it seemed like getting and keeping my daughters weight up was a big focus the first 2 years.

Body Mass Index (BMI) is directly correlated to lung function later in life. There are lots of tips and tricks to getting extra calories once they start baby food, and if he is taking enzymes, getting used to all that entails. Get to know your nutritionist.

 

[kellyga]

Sorry to hear about your son's diagnosis. It can be very overwhelming in the beginning. There is so much information to digest. It seems to be better if you can break it into small chunks. CF is a complex issue and effects each child so differently. It is difficult to figure out what you should focus on at first, because you don't know yet how your son's body will present CF.
<br />
<br />We are almost 3 years in, and I think that one thing I can suggest is to focus on nutrition at first. He will definitely need his chest therapy (CPT), and you will need to start building his bubble to keep him away from all the germs, but it seemed like getting and keeping my daughters weight up was a big focus the first 2 years.
<br />
<br />Body Mass Index (BMI) is directly correlated to lung function later in life. There are lots of tips and tricks to getting extra calories once they start baby food, and if he is taking enzymes, getting used to all that entails. Get to know your nutritionist.

 

[meteoras69]

Congratulations on your new baby. I am sorry to hear about his diagnosis. It is overwhelming at first but will get easier with time, I promise.

I agree with others that the primary focus in the beginning is likely to be nutrition. I would encourage you to dialogue openly with the nutritionist, and to begin getting ideas now about how to get extra calories into your little guy. We had a really difficult time with this during the first year,and had to consult a few different nutritionists/dieticians before we found what worked for our son. Feel free to private message me here through this site. I'd be happy to provide any info I can or answer any questions that I can.

Hope you are enjoying this first holiday season with little Parker!
--Ginger

 

[meteoras69]

Congratulations on your new baby. I am sorry to hear about his diagnosis. It is overwhelming at first but will get easier with time, I promise.

I agree with others that the primary focus in the beginning is likely to be nutrition. I would encourage you to dialogue openly with the nutritionist, and to begin getting ideas now about how to get extra calories into your little guy. We had a really difficult time with this during the first year,and had to consult a few different nutritionists/dieticians before we found what worked for our son. Feel free to private message me here through this site. I'd be happy to provide any info I can or answer any questions that I can.

Hope you are enjoying this first holiday season with little Parker!
--Ginger

 

[meteoras69]

Congratulations on your new baby. I am sorry to hear about his diagnosis. It is overwhelming at first but will get easier with time, I promise.
<br />
<br />I agree with others that the primary focus in the beginning is likely to be nutrition. I would encourage you to dialogue openly with the nutritionist, and to begin getting ideas now about how to get extra calories into your little guy. We had a really difficult time with this during the first year,and had to consult a few different nutritionists/dieticians before we found what worked for our son. Feel free to private message me here through this site. I'd be happy to provide any info I can or answer any questions that I can.
<br />
<br />Hope you are enjoying this first holiday season with little Parker!
<br />--Ginger

 

[Cherylwithone]

Congrats on your little one. They are such a joy. My advice is take a deep breath and don't worry about what you can not change. With that said I know it is very hard to hear that your child has CF. Find out if your clinic is pro active. Your want them to be. Keeping the weight on and up it tops. Everything else will fall into place.

Then please let him be a kid. I have my daughter in public school and yes she gets germs. But, she would get them anyways. Things will come up and you will not want to do certain things. Do not lump everything together. If Aunt B is coughing her head off and likes to touch all the time then you wil learn to skip athe family gathering when Aunt B is sick. She is living life and being a child/teenager first and the CF just happens to be there.

You do not want your child to grow up with regrets. He is going to want to play sports etc.

Your first real appointment at a CF clinic will be long. Bring a paper and pen. After that is when you will think of all kinds of questions to ask.

 

[Cherylwithone]

Congrats on your little one. They are such a joy. My advice is take a deep breath and don't worry about what you can not change. With that said I know it is very hard to hear that your child has CF. Find out if your clinic is pro active. Your want them to be. Keeping the weight on and up it tops. Everything else will fall into place.

Then please let him be a kid. I have my daughter in public school and yes she gets germs. But, she would get them anyways. Things will come up and you will not want to do certain things. Do not lump everything together. If Aunt B is coughing her head off and likes to touch all the time then you wil learn to skip athe family gathering when Aunt B is sick. She is living life and being a child/teenager first and the CF just happens to be there.

You do not want your child to grow up with regrets. He is going to want to play sports etc.

Your first real appointment at a CF clinic will be long. Bring a paper and pen. After that is when you will think of all kinds of questions to ask.

 

[Cherylwithone]

Congrats on your little one. They are such a joy. My advice is take a deep breath and don't worry about what you can not change. With that said I know it is very hard to hear that your child has CF. Find out if your clinic is pro active. Your want them to be. Keeping the weight on and up it tops. Everything else will fall into place.
<br />
<br />Then please let him be a kid. I have my daughter in public school and yes she gets germs. But, she would get them anyways. Things will come up and you will not want to do certain things. Do not lump everything together. If Aunt B is coughing her head off and likes to touch all the time then you wil learn to skip athe family gathering when Aunt B is sick. She is living life and being a child/teenager first and the CF just happens to be there.
<br />
<br />You do not want your child to grow up with regrets. He is going to want to play sports etc.
<br />
<br />Your first real appointment at a CF clinic will be long. Bring a paper and pen. After that is when you will think of all kinds of questions to ask.

 

[Ratatosk]

Enjoy your child, enjoy normal baby milestones. DS was diagnosed a few days after birth and it was so overwhelming. The what ifs, worrying if DS would end up in the hospital -- the cf parents I spoke to all had MUCH older children and had horror stories about that first year. However, DS did fine -- we took it one step at a time. Got into a routine with chest physiotherapy, nebs, enzymes and other medications. Got a little more confident.

DH and I both work full time and DS began daycare at 3 months. It wasn't an easy decision and we discussed this with his doctor. Figured we'd rethink things if it didn't work out -- DS was fine.

Today ds is a busy, active first grader and involved in gymnastics, skating....

 

[Ratatosk]

Enjoy your child, enjoy normal baby milestones. DS was diagnosed a few days after birth and it was so overwhelming. The what ifs, worrying if DS would end up in the hospital -- the cf parents I spoke to all had MUCH older children and had horror stories about that first year. However, DS did fine -- we took it one step at a time. Got into a routine with chest physiotherapy, nebs, enzymes and other medications. Got a little more confident.

DH and I both work full time and DS began daycare at 3 months. It wasn't an easy decision and we discussed this with his doctor. Figured we'd rethink things if it didn't work out -- DS was fine.

Today ds is a busy, active first grader and involved in gymnastics, skating....

 

[Ratatosk]

Enjoy your child, enjoy normal baby milestones. DS was diagnosed a few days after birth and it was so overwhelming. The what ifs, worrying if DS would end up in the hospital -- the cf parents I spoke to all had MUCH older children and had horror stories about that first year. However, DS did fine -- we took it one step at a time. Got into a routine with chest physiotherapy, nebs, enzymes and other medications. Got a little more confident.
<br />
<br />DH and I both work full time and DS began daycare at 3 months. It wasn't an easy decision and we discussed this with his doctor. Figured we'd rethink things if it didn't work out -- DS was fine.
<br />
<br />Today ds is a busy, active first grader and involved in gymnastics, skating....

 

[NancyLKF]

Hi. Congrats on your son. Sorry to hear about his diagnosis. Questions will definitely come up naturally as he grows and hopefully the clinic will offer up advice such as keeping him away from smokers and making sure no one around him is ill, using sanitizer, etc. Always feel free to ask questions here.
We are two years in (daughter was diagnosed at 6 days old) and it gets easier and I've grown a thicker skin when it comes to standing up for my daughter's health.
I will find you on facebook!

 

[NancyLKF]

Hi. Congrats on your son. Sorry to hear about his diagnosis. Questions will definitely come up naturally as he grows and hopefully the clinic will offer up advice such as keeping him away from smokers and making sure no one around him is ill, using sanitizer, etc. Always feel free to ask questions here.
We are two years in (daughter was diagnosed at 6 days old) and it gets easier and I've grown a thicker skin when it comes to standing up for my daughter's health.
I will find you on facebook!