Looking for questions to ask and for friends

[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.
<br />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.
<br />I will find you on facebook!

 

[izemmom]

Hi!

Welcome to the site, and to the CFmomma club. None of us wants to be here, but here we are, and we're a pretty good group to be around! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Congratulations on your dear little Parker. As others have said, be sure to cherish this time with him and don't get too caught up in the CF madness.

As far as what questions to ask, well, those will come to you. Just remember to ask about EVERYTHING that enters your mind. Your CF team is there to answer everything, more than once, if needed. THey will be your best defense, but also don't know everything and don't know Parker like you do, so get used to thinking of yourself and Parker's daddy as the team captains. It will be your job to get what you need from the other players.

You will want to know his specific genetic mutations if you don't already. There isn't a direct correlation between symprom severity and mutation type, BUT, it's interesting and helpful to know, nonetheless. Particularly as you start to read about some of the new therapies in the "pipeline". Some of those target specific mutation types. It's good to know where you stand.

Visit here often, and if you read a lot of parents talking about particular things your clinic hasn't brought up yet, ASK! For the first two or three years our CF team shook their heads in amazement at the crazy things I came up with. But, they learned that I would always be on the ball, and I trust that the give Emily great care.

I'll look you up on FB. I look forward to getting to know you!!!

 

[izemmom]

Hi!

Welcome to the site, and to the CFmomma club. None of us wants to be here, but here we are, and we're a pretty good group to be around! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Congratulations on your dear little Parker. As others have said, be sure to cherish this time with him and don't get too caught up in the CF madness.

As far as what questions to ask, well, those will come to you. Just remember to ask about EVERYTHING that enters your mind. Your CF team is there to answer everything, more than once, if needed. THey will be your best defense, but also don't know everything and don't know Parker like you do, so get used to thinking of yourself and Parker's daddy as the team captains. It will be your job to get what you need from the other players.

You will want to know his specific genetic mutations if you don't already. There isn't a direct correlation between symprom severity and mutation type, BUT, it's interesting and helpful to know, nonetheless. Particularly as you start to read about some of the new therapies in the "pipeline". Some of those target specific mutation types. It's good to know where you stand.

Visit here often, and if you read a lot of parents talking about particular things your clinic hasn't brought up yet, ASK! For the first two or three years our CF team shook their heads in amazement at the crazy things I came up with. But, they learned that I would always be on the ball, and I trust that the give Emily great care.

I'll look you up on FB. I look forward to getting to know you!!!

 

[izemmom]

Hi!
<br />
<br />Welcome to the site, and to the CFmomma club. None of us wants to be here, but here we are, and we're a pretty good group to be around! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Congratulations on your dear little Parker. As others have said, be sure to cherish this time with him and don't get too caught up in the CF madness.
<br />
<br />As far as what questions to ask, well, those will come to you. Just remember to ask about EVERYTHING that enters your mind. Your CF team is there to answer everything, more than once, if needed. THey will be your best defense, but also don't know everything and don't know Parker like you do, so get used to thinking of yourself and Parker's daddy as the team captains. It will be your job to get what you need from the other players.
<br />
<br />You will want to know his specific genetic mutations if you don't already. There isn't a direct correlation between symprom severity and mutation type, BUT, it's interesting and helpful to know, nonetheless. Particularly as you start to read about some of the new therapies in the "pipeline". Some of those target specific mutation types. It's good to know where you stand.
<br />
<br />Visit here often, and if you read a lot of parents talking about particular things your clinic hasn't brought up yet, ASK! For the first two or three years our CF team shook their heads in amazement at the crazy things I came up with. But, they learned that I would always be on the ball, and I trust that the give Emily great care.
<br />
<br />I'll look you up on FB. I look forward to getting to know you!!!

 

[CFmami]

Congratulations on your new baby!! I'm sorry about the diagnosis. Enjoy your baby!! Little by litte you get into the routine. DD goes to school, Daycare, mall, etc. I try to make sure she washes her hands often. So far the biggest issue for us is meal times. She is PI and a very picky eater. This is the best place to learn and "talk" to people that is going through the same. Welcome!!

 

[CFmami]

Congratulations on your new baby!! I'm sorry about the diagnosis. Enjoy your baby!! Little by litte you get into the routine. DD goes to school, Daycare, mall, etc. I try to make sure she washes her hands often. So far the biggest issue for us is meal times. She is PI and a very picky eater. This is the best place to learn and "talk" to people that is going through the same. Welcome!!

 

[CFmami]

Congratulations on your new baby!! I'm sorry about the diagnosis. Enjoy your baby!! Little by litte you get into the routine. DD goes to school, Daycare, mall, etc. I try to make sure she washes her hands often. So far the biggest issue for us is meal times. She is PI and a very picky eater. This is the best place to learn and "talk" to people that is going through the same. Welcome!!

 

[imagine04]

Thanks for all of the warm welcomes! They really mean so much to me. I'm really hoping to get to know you all over time. I try to get online as much as possible and FB seems to be the one thing i manage to login to for at least a few minutes here and there during the day. <img src="i/expressions/face-icon-small-smile.gif" border="0">

While i still cry at least once a day, I am coming to realize that this is now my life and i need to adjust. We've established a pretty good routine, i think... i suppose things will always need to be shifted around a bit depending on the needs for the week/month.

Parker just started on Pulmozyme 1x/day. He is also on Albuterol 4 puffs/day (unless sick), Zantac 1ml 2x's/day, Source CF Ped Drops 1ml/day and Creon (currently 1/2cap every other feed). We are currently doing PD&P 2x's/day 10min each session and we add salt to his applesauce with the enzyme feeds.

He is gaining weight very well right now which our nutritionist is LOVING. He's in the 75th percentile for his weight and 25th for height. At his weight check this past Tuesday (we take him in weekly right now) he was 11lbs. 2oz. <img src="i/expressions/face-icon-small-smile.gif" border="0"> His birth weight on 10/26/10 was 6lbs. 12oz. So he's doing pretty well!

Our CF Center is University of Michigan in Ann Arbor, MI and we really do like our team very much. They've been very helpful and have taken so many phone calls from us already since we're 2hrs from them. We go once a month to Clinic Appt's for the first year and then it'll change to every 3 months. We're really just hoping to make it through Parker's first year with no major hiccups.

Anyhow, thanks again to all of you for the welcomes! My little man is crying so time for mommy and daddy to go love on him <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[imagine04]

Thanks for all of the warm welcomes! They really mean so much to me. I'm really hoping to get to know you all over time. I try to get online as much as possible and FB seems to be the one thing i manage to login to for at least a few minutes here and there during the day. <img src="i/expressions/face-icon-small-smile.gif" border="0">

While i still cry at least once a day, I am coming to realize that this is now my life and i need to adjust. We've established a pretty good routine, i think... i suppose things will always need to be shifted around a bit depending on the needs for the week/month.

Parker just started on Pulmozyme 1x/day. He is also on Albuterol 4 puffs/day (unless sick), Zantac 1ml 2x's/day, Source CF Ped Drops 1ml/day and Creon (currently 1/2cap every other feed). We are currently doing PD&P 2x's/day 10min each session and we add salt to his applesauce with the enzyme feeds.

He is gaining weight very well right now which our nutritionist is LOVING. He's in the 75th percentile for his weight and 25th for height. At his weight check this past Tuesday (we take him in weekly right now) he was 11lbs. 2oz. <img src="i/expressions/face-icon-small-smile.gif" border="0"> His birth weight on 10/26/10 was 6lbs. 12oz. So he's doing pretty well!

Our CF Center is University of Michigan in Ann Arbor, MI and we really do like our team very much. They've been very helpful and have taken so many phone calls from us already since we're 2hrs from them. We go once a month to Clinic Appt's for the first year and then it'll change to every 3 months. We're really just hoping to make it through Parker's first year with no major hiccups.

Anyhow, thanks again to all of you for the welcomes! My little man is crying so time for mommy and daddy to go love on him <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[imagine04]

Thanks for all of the warm welcomes! They really mean so much to me. I'm really hoping to get to know you all over time. I try to get online as much as possible and FB seems to be the one thing i manage to login to for at least a few minutes here and there during the day. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />While i still cry at least once a day, I am coming to realize that this is now my life and i need to adjust. We've established a pretty good routine, i think... i suppose things will always need to be shifted around a bit depending on the needs for the week/month.
<br />
<br />Parker just started on Pulmozyme 1x/day. He is also on Albuterol 4 puffs/day (unless sick), Zantac 1ml 2x's/day, Source CF Ped Drops 1ml/day and Creon (currently 1/2cap every other feed). We are currently doing PD&P 2x's/day 10min each session and we add salt to his applesauce with the enzyme feeds.
<br />
<br />He is gaining weight very well right now which our nutritionist is LOVING. He's in the 75th percentile for his weight and 25th for height. At his weight check this past Tuesday (we take him in weekly right now) he was 11lbs. 2oz. <img src="i/expressions/face-icon-small-smile.gif" border="0"> His birth weight on 10/26/10 was 6lbs. 12oz. So he's doing pretty well!
<br />
<br />Our CF Center is University of Michigan in Ann Arbor, MI and we really do like our team very much. They've been very helpful and have taken so many phone calls from us already since we're 2hrs from them. We go once a month to Clinic Appt's for the first year and then it'll change to every 3 months. We're really just hoping to make it through Parker's first year with no major hiccups.
<br />
<br />Anyhow, thanks again to all of you for the welcomes! My little man is crying so time for mommy and daddy to go love on him <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[CFGurl16]

<img src="i/expressions/face-icon-small-smile.gif" border="0">Hello.
My name is Samantha and I am 19. I was diagnoised with CF when I was one. It's been so hard on my Dad and Sister but they have been there the whole time and I may even saying my having CF maybe rougher on them than it is for me. CF paients tend to get used to having CF even if it takes awhile they get used to getting sick and after awhile we know what the treatment for what ever is wrong is. But my Dad and Sister didn't know much other than the fact that I was sick. They couldn't relate at all and after my Dad tried telling me understood exactly what I was going through I got angry cause he didn't know. He was always sick, he didn't have to go into the hospital for week on end and sometimes longer,he didn't have CF. After we got into a fight about that he tried to just be there for me and stopped trying to know exactly what was going on in my mind. Which was a good thing it made our bound that much stronger. And I thank GOD everyday that my Dad is around cause without I wouldn't really have anyone he was the one by my side everyday and he was the one that fought with me when I was younger to do my treatments and take my pills. My Sister was there for me more my Brother and wanted to spend as much time with me as I got older that way she would always know that she cares. And I do. I wouldn't have made it this far with out her, she was my sister and my bestfriend.
Now my Mother and Brother however didn't spend much time with me at all. My Mom pushed me away and my Brother saw me as just an annoying little sister. But after awhile my brother got what was going on a little better but we still aren't as my Sister and I are.
My Mother however stgill dosen't spend time with me actually she moved away from me...Which was heartbreaking and I still love her for she is still my Mother. I don't like the choices she made but I love her.

So I that this kinda helps.
Just remember only thing to really do is support him and take good care of him.
Plus when CFers learn how to take care of themselves when their younger they do a better job of it when they get in their teen and adulthood.

 

[CFGurl16]

<img src="i/expressions/face-icon-small-smile.gif" border="0">Hello.
My name is Samantha and I am 19. I was diagnoised with CF when I was one. It's been so hard on my Dad and Sister but they have been there the whole time and I may even saying my having CF maybe rougher on them than it is for me. CF paients tend to get used to having CF even if it takes awhile they get used to getting sick and after awhile we know what the treatment for what ever is wrong is. But my Dad and Sister didn't know much other than the fact that I was sick. They couldn't relate at all and after my Dad tried telling me understood exactly what I was going through I got angry cause he didn't know. He was always sick, he didn't have to go into the hospital for week on end and sometimes longer,he didn't have CF. After we got into a fight about that he tried to just be there for me and stopped trying to know exactly what was going on in my mind. Which was a good thing it made our bound that much stronger. And I thank GOD everyday that my Dad is around cause without I wouldn't really have anyone he was the one by my side everyday and he was the one that fought with me when I was younger to do my treatments and take my pills. My Sister was there for me more my Brother and wanted to spend as much time with me as I got older that way she would always know that she cares. And I do. I wouldn't have made it this far with out her, she was my sister and my bestfriend.
Now my Mother and Brother however didn't spend much time with me at all. My Mom pushed me away and my Brother saw me as just an annoying little sister. But after awhile my brother got what was going on a little better but we still aren't as my Sister and I are.
My Mother however stgill dosen't spend time with me actually she moved away from me...Which was heartbreaking and I still love her for she is still my Mother. I don't like the choices she made but I love her.

So I that this kinda helps.
Just remember only thing to really do is support him and take good care of him.
Plus when CFers learn how to take care of themselves when their younger they do a better job of it when they get in their teen and adulthood.

 

[CFGurl16]

<img src="i/expressions/face-icon-small-smile.gif" border="0">Hello.
<br />My name is Samantha and I am 19. I was diagnoised with CF when I was one. It's been so hard on my Dad and Sister but they have been there the whole time and I may even saying my having CF maybe rougher on them than it is for me. CF paients tend to get used to having CF even if it takes awhile they get used to getting sick and after awhile we know what the treatment for what ever is wrong is. But my Dad and Sister didn't know much other than the fact that I was sick. They couldn't relate at all and after my Dad tried telling me understood exactly what I was going through I got angry cause he didn't know. He was always sick, he didn't have to go into the hospital for week on end and sometimes longer,he didn't have CF. After we got into a fight about that he tried to just be there for me and stopped trying to know exactly what was going on in my mind. Which was a good thing it made our bound that much stronger. And I thank GOD everyday that my Dad is around cause without I wouldn't really have anyone he was the one by my side everyday and he was the one that fought with me when I was younger to do my treatments and take my pills. My Sister was there for me more my Brother and wanted to spend as much time with me as I got older that way she would always know that she cares. And I do. I wouldn't have made it this far with out her, she was my sister and my bestfriend.
<br />Now my Mother and Brother however didn't spend much time with me at all. My Mom pushed me away and my Brother saw me as just an annoying little sister. But after awhile my brother got what was going on a little better but we still aren't as my Sister and I are.
<br />My Mother however stgill dosen't spend time with me actually she moved away from me...Which was heartbreaking and I still love her for she is still my Mother. I don't like the choices she made but I love her.
<br />
<br />So I that this kinda helps.
<br />Just remember only thing to really do is support him and take good care of him.
<br />Plus when CFers learn how to take care of themselves when their younger they do a better job of it when they get in their teen and adulthood.

 

[SarahProcter]

Everyone's already covered the biggies, but the one thing I didn't see mentioned is asking about Synagis. Our daughter got monthly Synagis shots her first winter (she was also an October baby) to reduce the risk of getting an RSV infection during her first winter. RSV is a respiratory virus that basically everyone gets eventually and it's not a big deal for older kids or adults -- it's just a cold for them -- but it can have a very big impact on a newborn's lungs, so they give these shots to preemies and to infants with special concerns about their lungs during the peak RSV season to reduce their risk. Synagis is actually RSV antibodies, not a vaccination, so it has to be repeated monthly during the high-risk season.

Not every CF center does this but it's worth asking about! Our insurance covered it without question based on the preauthorization request from the CF clinic (which is good because it's expensive otherwise!)

Congratulations on your new baby <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[SarahProcter]

Everyone's already covered the biggies, but the one thing I didn't see mentioned is asking about Synagis. Our daughter got monthly Synagis shots her first winter (she was also an October baby) to reduce the risk of getting an RSV infection during her first winter. RSV is a respiratory virus that basically everyone gets eventually and it's not a big deal for older kids or adults -- it's just a cold for them -- but it can have a very big impact on a newborn's lungs, so they give these shots to preemies and to infants with special concerns about their lungs during the peak RSV season to reduce their risk. Synagis is actually RSV antibodies, not a vaccination, so it has to be repeated monthly during the high-risk season.

Not every CF center does this but it's worth asking about! Our insurance covered it without question based on the preauthorization request from the CF clinic (which is good because it's expensive otherwise!)

Congratulations on your new baby <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[SarahProcter]

Everyone's already covered the biggies, but the one thing I didn't see mentioned is asking about Synagis. Our daughter got monthly Synagis shots her first winter (she was also an October baby) to reduce the risk of getting an RSV infection during her first winter. RSV is a respiratory virus that basically everyone gets eventually and it's not a big deal for older kids or adults -- it's just a cold for them -- but it can have a very big impact on a newborn's lungs, so they give these shots to preemies and to infants with special concerns about their lungs during the peak RSV season to reduce their risk. Synagis is actually RSV antibodies, not a vaccination, so it has to be repeated monthly during the high-risk season.
<br />
<br />Not every CF center does this but it's worth asking about! Our insurance covered it without question based on the preauthorization request from the CF clinic (which is good because it's expensive otherwise!)
<br />
<br />Congratulations on your new baby <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ymikhale]

If I could give you one piece of advice then it would be to be very watchful and keep on top of everything. Doctors knows medecine better than us, CF parents, but even the best doctors can make mistakes b/c they are busy, tired, had a bad day etc.

I am saying this from personal experience: only recently my dd was put on an antibiotic for 10 days, but I noticed that last time it was 14 days and all the studies were also done on 14 day course. As it turned out it was a "typing error".

 

[ymikhale]

If I could give you one piece of advice then it would be to be very watchful and keep on top of everything. Doctors knows medecine better than us, CF parents, but even the best doctors can make mistakes b/c they are busy, tired, had a bad day etc.

I am saying this from personal experience: only recently my dd was put on an antibiotic for 10 days, but I noticed that last time it was 14 days and all the studies were also done on 14 day course. As it turned out it was a "typing error".

 

[ymikhale]

If I could give you one piece of advice then it would be to be very watchful and keep on top of everything. Doctors knows medecine better than us, CF parents, but even the best doctors can make mistakes b/c they are busy, tired, had a bad day etc.
<br />
<br />I am saying this from personal experience: only recently my dd was put on an antibiotic for 10 days, but I noticed that last time it was 14 days and all the studies were also done on 14 day course. As it turned out it was a "typing error".
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