first CF Clinic Appt coming up
- Thread starter bmombtoo
- Start date
aliciagwen
New member
Everyone has given you good information. They've told you
exactly what I would have said. I would like to reiterate how
helpful it will be to you if you take a list of questions.
You already know much more than we did before we got the
"summons". I didn't even know what to ask, so the
great thing is that you already have a jumping off point of what to
ask your son's doctor. After you ask your questions, I would
say to your doctor that you will probably have more after this 1st
visit. Bring your list in the next time! I have never
met a better doctor than my daughter's CF doctor. Most
especially that 1st visit receiving the shocking news, he was more
than patient.<br>
<br>
The only other thing I would tell you is that you will be given the
option to add your son to the national registry of those with CF.
By gathering this information in one place, they are able to
study trends that will help in finding a cure for our kids!
You don't have to bring anything with you to complete it-I'm
just letting you know it's part of what happens that 1st day.
<br>
<br>
Alicia Smith<br>
Mom to Samantha, 10 month old with CF<br>
exactly what I would have said. I would like to reiterate how
helpful it will be to you if you take a list of questions.
You already know much more than we did before we got the
"summons". I didn't even know what to ask, so the
great thing is that you already have a jumping off point of what to
ask your son's doctor. After you ask your questions, I would
say to your doctor that you will probably have more after this 1st
visit. Bring your list in the next time! I have never
met a better doctor than my daughter's CF doctor. Most
especially that 1st visit receiving the shocking news, he was more
than patient.<br>
<br>
The only other thing I would tell you is that you will be given the
option to add your son to the national registry of those with CF.
By gathering this information in one place, they are able to
study trends that will help in finding a cure for our kids!
You don't have to bring anything with you to complete it-I'm
just letting you know it's part of what happens that 1st day.
<br>
<br>
Alicia Smith<br>
Mom to Samantha, 10 month old with CF<br>
aliciagwen
New member
Everyone has given you good information. They've told you
exactly what I would have said. I would like to reiterate how
helpful it will be to you if you take a list of questions.
You already know much more than we did before we got the
"summons". I didn't even know what to ask, so the
great thing is that you already have a jumping off point of what to
ask your son's doctor. After you ask your questions, I would
say to your doctor that you will probably have more after this 1st
visit. Bring your list in the next time! I have never
met a better doctor than my daughter's CF doctor. Most
especially that 1st visit receiving the shocking news, he was more
than patient.<br>
<br>
The only other thing I would tell you is that you will be given the
option to add your son to the national registry of those with CF.
By gathering this information in one place, they are able to
study trends that will help in finding a cure for our kids!
You don't have to bring anything with you to complete it-I'm
just letting you know it's part of what happens that 1st day.
<br>
<br>
Alicia Smith<br>
Mom to Samantha, 10 month old with CF<br>
exactly what I would have said. I would like to reiterate how
helpful it will be to you if you take a list of questions.
You already know much more than we did before we got the
"summons". I didn't even know what to ask, so the
great thing is that you already have a jumping off point of what to
ask your son's doctor. After you ask your questions, I would
say to your doctor that you will probably have more after this 1st
visit. Bring your list in the next time! I have never
met a better doctor than my daughter's CF doctor. Most
especially that 1st visit receiving the shocking news, he was more
than patient.<br>
<br>
The only other thing I would tell you is that you will be given the
option to add your son to the national registry of those with CF.
By gathering this information in one place, they are able to
study trends that will help in finding a cure for our kids!
You don't have to bring anything with you to complete it-I'm
just letting you know it's part of what happens that 1st day.
<br>
<br>
Alicia Smith<br>
Mom to Samantha, 10 month old with CF<br>
aliciagwen
New member
Everyone has given you good information. They've told you
exactly what I would have said. I would like to reiterate how
helpful it will be to you if you take a list of questions.
You already know much more than we did before we got the
"summons". I didn't even know what to ask, so the
great thing is that you already have a jumping off point of what to
ask your son's doctor. After you ask your questions, I would
say to your doctor that you will probably have more after this 1st
visit. Bring your list in the next time! I have never
met a better doctor than my daughter's CF doctor. Most
especially that 1st visit receiving the shocking news, he was more
than patient.<br>
<br>
The only other thing I would tell you is that you will be given the
option to add your son to the national registry of those with CF.
By gathering this information in one place, they are able to
study trends that will help in finding a cure for our kids!
You don't have to bring anything with you to complete it-I'm
just letting you know it's part of what happens that 1st day.
<br>
<br>
Alicia Smith<br>
Mom to Samantha, 10 month old with CF<br>
exactly what I would have said. I would like to reiterate how
helpful it will be to you if you take a list of questions.
You already know much more than we did before we got the
"summons". I didn't even know what to ask, so the
great thing is that you already have a jumping off point of what to
ask your son's doctor. After you ask your questions, I would
say to your doctor that you will probably have more after this 1st
visit. Bring your list in the next time! I have never
met a better doctor than my daughter's CF doctor. Most
especially that 1st visit receiving the shocking news, he was more
than patient.<br>
<br>
The only other thing I would tell you is that you will be given the
option to add your son to the national registry of those with CF.
By gathering this information in one place, they are able to
study trends that will help in finding a cure for our kids!
You don't have to bring anything with you to complete it-I'm
just letting you know it's part of what happens that 1st day.
<br>
<br>
Alicia Smith<br>
Mom to Samantha, 10 month old with CF<br>
First, ignore everyone's comments. Every case is different. Because diagnosis didn't come until age 12, you can start with the assumption that your son is on the mild end of the spectrum.
Second, know that because he has now been diagnosed, he will actually be healthier in the nex 3-6 months than he has been. Diagnosis didn't change anything. He's had CF since he was born. You now just have new/better information. He made it 12 years without any enzyzmes (to digest food) or medications for his lungs.
Third, medicine and treatment technology are advancing at an unbelievable pace. Your son will have amazing opportunities in front of him.
I know it sounds easy for me to say, but I have a 12 year old son with CF, diagnosed at age 5, currently been in the hospital for 5 days and counting. I can understand your initial terror.
Fourth, crying is OK. Understaand that your son is likely to live a long, productive life. He can go to college. He can have a career. He can have family. He can enjoy life. There is plenty of hope. Wait for 6-12 months, then get involved with your local CFF chapter.
Second, know that because he has now been diagnosed, he will actually be healthier in the nex 3-6 months than he has been. Diagnosis didn't change anything. He's had CF since he was born. You now just have new/better information. He made it 12 years without any enzyzmes (to digest food) or medications for his lungs.
Third, medicine and treatment technology are advancing at an unbelievable pace. Your son will have amazing opportunities in front of him.
I know it sounds easy for me to say, but I have a 12 year old son with CF, diagnosed at age 5, currently been in the hospital for 5 days and counting. I can understand your initial terror.
Fourth, crying is OK. Understaand that your son is likely to live a long, productive life. He can go to college. He can have a career. He can have family. He can enjoy life. There is plenty of hope. Wait for 6-12 months, then get involved with your local CFF chapter.
First, ignore everyone's comments. Every case is different. Because diagnosis didn't come until age 12, you can start with the assumption that your son is on the mild end of the spectrum.
Second, know that because he has now been diagnosed, he will actually be healthier in the nex 3-6 months than he has been. Diagnosis didn't change anything. He's had CF since he was born. You now just have new/better information. He made it 12 years without any enzyzmes (to digest food) or medications for his lungs.
Third, medicine and treatment technology are advancing at an unbelievable pace. Your son will have amazing opportunities in front of him.
I know it sounds easy for me to say, but I have a 12 year old son with CF, diagnosed at age 5, currently been in the hospital for 5 days and counting. I can understand your initial terror.
Fourth, crying is OK. Understaand that your son is likely to live a long, productive life. He can go to college. He can have a career. He can have family. He can enjoy life. There is plenty of hope. Wait for 6-12 months, then get involved with your local CFF chapter.
Second, know that because he has now been diagnosed, he will actually be healthier in the nex 3-6 months than he has been. Diagnosis didn't change anything. He's had CF since he was born. You now just have new/better information. He made it 12 years without any enzyzmes (to digest food) or medications for his lungs.
Third, medicine and treatment technology are advancing at an unbelievable pace. Your son will have amazing opportunities in front of him.
I know it sounds easy for me to say, but I have a 12 year old son with CF, diagnosed at age 5, currently been in the hospital for 5 days and counting. I can understand your initial terror.
Fourth, crying is OK. Understaand that your son is likely to live a long, productive life. He can go to college. He can have a career. He can have family. He can enjoy life. There is plenty of hope. Wait for 6-12 months, then get involved with your local CFF chapter.
First, ignore everyone's comments. Every case is different. Because diagnosis didn't come until age 12, you can start with the assumption that your son is on the mild end of the spectrum.
Second, know that because he has now been diagnosed, he will actually be healthier in the nex 3-6 months than he has been. Diagnosis didn't change anything. He's had CF since he was born. You now just have new/better information. He made it 12 years without any enzyzmes (to digest food) or medications for his lungs.
Third, medicine and treatment technology are advancing at an unbelievable pace. Your son will have amazing opportunities in front of him.
I know it sounds easy for me to say, but I have a 12 year old son with CF, diagnosed at age 5, currently been in the hospital for 5 days and counting. I can understand your initial terror.
Fourth, crying is OK. Understaand that your son is likely to live a long, productive life. He can go to college. He can have a career. He can have family. He can enjoy life. There is plenty of hope. Wait for 6-12 months, then get involved with your local CFF chapter.
Second, know that because he has now been diagnosed, he will actually be healthier in the nex 3-6 months than he has been. Diagnosis didn't change anything. He's had CF since he was born. You now just have new/better information. He made it 12 years without any enzyzmes (to digest food) or medications for his lungs.
Third, medicine and treatment technology are advancing at an unbelievable pace. Your son will have amazing opportunities in front of him.
I know it sounds easy for me to say, but I have a 12 year old son with CF, diagnosed at age 5, currently been in the hospital for 5 days and counting. I can understand your initial terror.
Fourth, crying is OK. Understaand that your son is likely to live a long, productive life. He can go to college. He can have a career. He can have family. He can enjoy life. There is plenty of hope. Wait for 6-12 months, then get involved with your local CFF chapter.
To Anon at 9:58<br>
<br>
I think it is a little rude to tell her to ignore everyone's
comments. The people that responded to her question are
trying to help her. Her son may be older and not diagnosed at
birth, but he has had many respiratory infections and has had sinus
surgery where they found polyps. He has not gone symptom
free, he was just not correctly diagnosed, partly because he is
african-american and it is not a common disease among the race.
I think it is great that your son is doing so well, but just
because her son had a late diagnosis does not mean that she should
ignore the problem. <br>
<br>
<br>
<br>
I think it is a little rude to tell her to ignore everyone's
comments. The people that responded to her question are
trying to help her. Her son may be older and not diagnosed at
birth, but he has had many respiratory infections and has had sinus
surgery where they found polyps. He has not gone symptom
free, he was just not correctly diagnosed, partly because he is
african-american and it is not a common disease among the race.
I think it is great that your son is doing so well, but just
because her son had a late diagnosis does not mean that she should
ignore the problem. <br>
<br>
<br>
To Anon at 9:58<br>
<br>
I think it is a little rude to tell her to ignore everyone's
comments. The people that responded to her question are
trying to help her. Her son may be older and not diagnosed at
birth, but he has had many respiratory infections and has had sinus
surgery where they found polyps. He has not gone symptom
free, he was just not correctly diagnosed, partly because he is
african-american and it is not a common disease among the race.
I think it is great that your son is doing so well, but just
because her son had a late diagnosis does not mean that she should
ignore the problem. <br>
<br>
<br>
<br>
I think it is a little rude to tell her to ignore everyone's
comments. The people that responded to her question are
trying to help her. Her son may be older and not diagnosed at
birth, but he has had many respiratory infections and has had sinus
surgery where they found polyps. He has not gone symptom
free, he was just not correctly diagnosed, partly because he is
african-american and it is not a common disease among the race.
I think it is great that your son is doing so well, but just
because her son had a late diagnosis does not mean that she should
ignore the problem. <br>
<br>
<br>
To Anon at 9:58<br>
<br>
I think it is a little rude to tell her to ignore everyone's
comments. The people that responded to her question are
trying to help her. Her son may be older and not diagnosed at
birth, but he has had many respiratory infections and has had sinus
surgery where they found polyps. He has not gone symptom
free, he was just not correctly diagnosed, partly because he is
african-american and it is not a common disease among the race.
I think it is great that your son is doing so well, but just
because her son had a late diagnosis does not mean that she should
ignore the problem. <br>
<br>
<br>
<br>
I think it is a little rude to tell her to ignore everyone's
comments. The people that responded to her question are
trying to help her. Her son may be older and not diagnosed at
birth, but he has had many respiratory infections and has had sinus
surgery where they found polyps. He has not gone symptom
free, he was just not correctly diagnosed, partly because he is
african-american and it is not a common disease among the race.
I think it is great that your son is doing so well, but just
because her son had a late diagnosis does not mean that she should
ignore the problem. <br>
<br>
<br>
Thanks guys. I'm going to do what I think is best and thank you
Buckeye for stepping in. Josh and I are new to all of this, but he
has had this disorder since he was born at 32 weeks and I now need
to become proactive. I doubt he will need enzymes but it is high
time to start some real CF treatment. <span style=
" font-size: medium;"><i>I treasure everyone's advice and believe
me you all have been a Godsend. I would be so lost if you all had
not normalized this disease for me.</i> <span style=
" font-size: small;">I <i>very</i> much prefer to go in to his
first official visit with my eyes open than thinking they will make
no changes in his life. My husband reminds me we will have to make
some changes in his care and make sure he gets his medicine.
<b>KNOWLEDGE IS POWER.</b>
Buckeye for stepping in. Josh and I are new to all of this, but he
has had this disorder since he was born at 32 weeks and I now need
to become proactive. I doubt he will need enzymes but it is high
time to start some real CF treatment. <span style=
" font-size: medium;"><i>I treasure everyone's advice and believe
me you all have been a Godsend. I would be so lost if you all had
not normalized this disease for me.</i> <span style=
" font-size: small;">I <i>very</i> much prefer to go in to his
first official visit with my eyes open than thinking they will make
no changes in his life. My husband reminds me we will have to make
some changes in his care and make sure he gets his medicine.
<b>KNOWLEDGE IS POWER.</b>
Thanks guys. I'm going to do what I think is best and thank you
Buckeye for stepping in. Josh and I are new to all of this, but he
has had this disorder since he was born at 32 weeks and I now need
to become proactive. I doubt he will need enzymes but it is high
time to start some real CF treatment. <span style=
" font-size: medium;"><i>I treasure everyone's advice and believe
me you all have been a Godsend. I would be so lost if you all had
not normalized this disease for me.</i> <span style=
" font-size: small;">I <i>very</i> much prefer to go in to his
first official visit with my eyes open than thinking they will make
no changes in his life. My husband reminds me we will have to make
some changes in his care and make sure he gets his medicine.
<b>KNOWLEDGE IS POWER.</b>
Buckeye for stepping in. Josh and I are new to all of this, but he
has had this disorder since he was born at 32 weeks and I now need
to become proactive. I doubt he will need enzymes but it is high
time to start some real CF treatment. <span style=
" font-size: medium;"><i>I treasure everyone's advice and believe
me you all have been a Godsend. I would be so lost if you all had
not normalized this disease for me.</i> <span style=
" font-size: small;">I <i>very</i> much prefer to go in to his
first official visit with my eyes open than thinking they will make
no changes in his life. My husband reminds me we will have to make
some changes in his care and make sure he gets his medicine.
<b>KNOWLEDGE IS POWER.</b>
Thanks guys. I'm going to do what I think is best and thank you
Buckeye for stepping in. Josh and I are new to all of this, but he
has had this disorder since he was born at 32 weeks and I now need
to become proactive. I doubt he will need enzymes but it is high
time to start some real CF treatment. <span style=
" font-size: medium;"><i>I treasure everyone's advice and believe
me you all have been a Godsend. I would be so lost if you all had
not normalized this disease for me.</i> <span style=
" font-size: small;">I <i>very</i> much prefer to go in to his
first official visit with my eyes open than thinking they will make
no changes in his life. My husband reminds me we will have to make
some changes in his care and make sure he gets his medicine.
<b>KNOWLEDGE IS POWER.</b>
Buckeye for stepping in. Josh and I are new to all of this, but he
has had this disorder since he was born at 32 weeks and I now need
to become proactive. I doubt he will need enzymes but it is high
time to start some real CF treatment. <span style=
" font-size: medium;"><i>I treasure everyone's advice and believe
me you all have been a Godsend. I would be so lost if you all had
not normalized this disease for me.</i> <span style=
" font-size: small;">I <i>very</i> much prefer to go in to his
first official visit with my eyes open than thinking they will make
no changes in his life. My husband reminds me we will have to make
some changes in his care and make sure he gets his medicine.
<b>KNOWLEDGE IS POWER.</b>
L
lemonstolemonade
Guest
I started a 1/2" notebook and collect all of our CF'ers
medical records in it...even from well child visits and other
primary care visits. Our CF clinic coordinates with her primary
care physician by sending their records to him and vice versa. I
just like to have a copy on hand...just in case. I don't have any
fancy tabs or anything, but at least I know it is all in one
location. Hum...I might have to work on getting organized!
<br>
<br>
If you are unsure of something at the appointment (why something is
being done, or isn't being done) ask about it. The staff usually
appreciate an informed parent who wants to make sure they
completely understand the care their child is receiving.<br>
<br>
Anne<br>
<br>
PS: Good luck at your visit! Can't wait to hear about it. We all
learn so much from clinic follow-up posts!!!
medical records in it...even from well child visits and other
primary care visits. Our CF clinic coordinates with her primary
care physician by sending their records to him and vice versa. I
just like to have a copy on hand...just in case. I don't have any
fancy tabs or anything, but at least I know it is all in one
location. Hum...I might have to work on getting organized!
<br><br>
If you are unsure of something at the appointment (why something is
being done, or isn't being done) ask about it. The staff usually
appreciate an informed parent who wants to make sure they
completely understand the care their child is receiving.<br>
<br>
Anne<br>
<br>
PS: Good luck at your visit! Can't wait to hear about it. We all
learn so much from clinic follow-up posts!!!