behavior problems with cf kids

[2perfectboys]

Hey Barbara,
Oh I do agree with the train analogy, but I think that train is not traveling as fast as it use to. Maybe i am just too positive, and have not really been trough enough of the bad CF experiences, but I will always hope, as i'm sure u have as a proud mother to a wonderful daughter, Emily. I don't think that cure will ever come, but I do think they will make CF controlable one day, like diabeties, wheter it is in 5 years, 10 years, or 50 years, the technology will continue to improve. In the 8 years, since my son was diagnoised, there has not really been any major medical advancements, but when I was talking to the lady about getting my son into the Denfuusol trial, she was talking so positively about the drug, and made the comment, wouldn't it have been nice to have this drug when he was born, but it wasn't, but if it is seen as benifical and gets FDA approval, there will be infants that can benefit from it from the begining helping better outcomes later.

Lori

 

[Darinsmom]

Hi Lori, Are you going to get your son in the clinical trial for denufosal? My son Darin who is 9 is going to start in March. We are excited and hope it will be beneficial to him and everyone!! Let me know if your son does, I would be curicious to see how he does.

Laurie

 

[Darinsmom]

Hi Lori, Are you going to get your son in the clinical trial for denufosal? My son Darin who is 9 is going to start in March. We are excited and hope it will be beneficial to him and everyone!! Let me know if your son does, I would be curicious to see how he does.

Laurie

 

[Darinsmom]

Hi Lori, Are you going to get your son in the clinical trial for denufosal? My son Darin who is 9 is going to start in March. We are excited and hope it will be beneficial to him and everyone!! Let me know if your son does, I would be curicious to see how he does.

Laurie

 

[EmilysMom]

Lori,
That train has definitely slowed WAY DOWN! When Emily was born the doctor told us she had a 50/50 chance of seeing her 18th birthday. She's 23 and doing pretty well, looking forward to graduating from college and her wedding to Mike. The drugs coming on the market every day are a huge part of the reason CF patients are doing better. Emily was on Pulmozyme 9 days after it came on the market.

 

[EmilysMom]

Lori,
That train has definitely slowed WAY DOWN! When Emily was born the doctor told us she had a 50/50 chance of seeing her 18th birthday. She's 23 and doing pretty well, looking forward to graduating from college and her wedding to Mike. The drugs coming on the market every day are a huge part of the reason CF patients are doing better. Emily was on Pulmozyme 9 days after it came on the market.

 

[EmilysMom]

Lori,
That train has definitely slowed WAY DOWN! When Emily was born the doctor told us she had a 50/50 chance of seeing her 18th birthday. She's 23 and doing pretty well, looking forward to graduating from college and her wedding to Mike. The drugs coming on the market every day are a huge part of the reason CF patients are doing better. Emily was on Pulmozyme 9 days after it came on the market.

 

[2perfectboys]

Hi Laurie,
Yes, we go thursday for screening. Keep your fingers crossed. I think your where I heard about this trial. I started a thread about this study. Will keep u informed, why r u waiting til March, could their numbers of needed volunteer be filled by then.
Lori

 

[2perfectboys]

Hi Laurie,
Yes, we go thursday for screening. Keep your fingers crossed. I think your where I heard about this trial. I started a thread about this study. Will keep u informed, why r u waiting til March, could their numbers of needed volunteer be filled by then.
Lori

 

[2perfectboys]

Hi Laurie,
Yes, we go thursday for screening. Keep your fingers crossed. I think your where I heard about this trial. I started a thread about this study. Will keep u informed, why r u waiting til March, could their numbers of needed volunteer be filled by then.
Lori

 

[Darinsmom]

Hi Lori,
I don't think the numbers will be filled by then. There's only going to be 5 children where we go to participate in the study and I know they wanted darin to try it. I guess there waiting till March because of scheduling? I'm not sure I talked to the lady in charge of it and that's when she said we would start. I will think of you Thursday and say a prayer. I did post on your thread too! I'm glad I found someone else who might be participating!

Laurie

 

[Darinsmom]

Hi Lori,
I don't think the numbers will be filled by then. There's only going to be 5 children where we go to participate in the study and I know they wanted darin to try it. I guess there waiting till March because of scheduling? I'm not sure I talked to the lady in charge of it and that's when she said we would start. I will think of you Thursday and say a prayer. I did post on your thread too! I'm glad I found someone else who might be participating!

Laurie

 

[Darinsmom]

Hi Lori,
I don't think the numbers will be filled by then. There's only going to be 5 children where we go to participate in the study and I know they wanted darin to try it. I guess there waiting till March because of scheduling? I'm not sure I talked to the lady in charge of it and that's when she said we would start. I will think of you Thursday and say a prayer. I did post on your thread too! I'm glad I found someone else who might be participating!

Laurie

 

[consmom]

Hi, I can't pass this one, sorry. I hope to God my son keeps his stubborn,pig headded ways for good ! He will need them ! He has to go through so much just to keep on a level par with his peers. He can't have the down time or the freedom they do because of all the meds and treatments he has to go through. I swear the only thing that keeps him going sometimes is that stubborn " I won't quit " look he gives when some kind, well meaning person ( feel the sarcasm ?) tells him he has done enough and he can take a break. I love that he has the spunk to turn to people and say I have cf so what? cf does not have me! although his gym teacher was not amused. I will agree that there is a line that has to be drawn because while I praise his stubborn ways I will not tolerate bad manners from him I don't care what he has. I do have one observation to make, many people have also found this and that is that cf kids tend to be old for thier age. I know my son is 7 going on 70 just with better skin .
Theese kids need to do so much fighting during thier life They need that extrs aditude

 

[consmom]

Hi, I can't pass this one, sorry. I hope to God my son keeps his stubborn,pig headded ways for good ! He will need them ! He has to go through so much just to keep on a level par with his peers. He can't have the down time or the freedom they do because of all the meds and treatments he has to go through. I swear the only thing that keeps him going sometimes is that stubborn " I won't quit " look he gives when some kind, well meaning person ( feel the sarcasm ?) tells him he has done enough and he can take a break. I love that he has the spunk to turn to people and say I have cf so what? cf does not have me! although his gym teacher was not amused. I will agree that there is a line that has to be drawn because while I praise his stubborn ways I will not tolerate bad manners from him I don't care what he has. I do have one observation to make, many people have also found this and that is that cf kids tend to be old for thier age. I know my son is 7 going on 70 just with better skin .
Theese kids need to do so much fighting during thier life They need that extrs aditude

 

[consmom]

Hi, I can't pass this one, sorry. I hope to God my son keeps his stubborn,pig headded ways for good ! He will need them ! He has to go through so much just to keep on a level par with his peers. He can't have the down time or the freedom they do because of all the meds and treatments he has to go through. I swear the only thing that keeps him going sometimes is that stubborn " I won't quit " look he gives when some kind, well meaning person ( feel the sarcasm ?) tells him he has done enough and he can take a break. I love that he has the spunk to turn to people and say I have cf so what? cf does not have me! although his gym teacher was not amused. I will agree that there is a line that has to be drawn because while I praise his stubborn ways I will not tolerate bad manners from him I don't care what he has. I do have one observation to make, many people have also found this and that is that cf kids tend to be old for thier age. I know my son is 7 going on 70 just with better skin .
Theese kids need to do so much fighting during thier life They need that extrs aditude

 

[charl72]

Definitely! Our youngest daughter has CF and she has ATTITUDE. She rules!<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[charl72]

Definitely! Our youngest daughter has CF and she has ATTITUDE. She rules!<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[charl72]

Definitely! Our youngest daughter has CF and she has ATTITUDE. She rules!<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[mum2kj]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>charl72</b></i>

Definitely! Our youngest daughter has CF and she has ATTITUDE. She rules!<img src="i/expressions/face-icon-small-happy.gif" border="0"></end quote></div>

hahaha Don't we all think that our kids ~~~RULE~~~ <img src="i/expressions/face-icon-small-smile.gif" border="0">