uncertain about the future but trying to stay positive

K

katzyloo

New member
Hi I am a young mum from Edinburgh in Scotland, UK. Yestarday it was confirmed by cf staff at the royal sick kids edinburgh my son has atypical cf. He is 6 weeks old and presents no cf symptoms at present. His stool sample has come back negative and staff have said it appears he is pancreas sufficient at the moment, his sweat test was positive with levels of 75.
After searching the web, Iam struggling to find any info on atypical cf that i feel i can fully trust.
Also i think this may be a US forum and iam unaware if diagnosis or treatment is different over there, however if anyone has any advice or knows first hand how atypical cf can affect an children and individuals, I would appreciate hearing from them.
thanks katie
 
K

katzyloo

New member
Hi I am a young mum from Edinburgh in Scotland, UK. Yestarday it was confirmed by cf staff at the royal sick kids edinburgh my son has atypical cf. He is 6 weeks old and presents no cf symptoms at present. His stool sample has come back negative and staff have said it appears he is pancreas sufficient at the moment, his sweat test was positive with levels of 75.
After searching the web, Iam struggling to find any info on atypical cf that i feel i can fully trust.
Also i think this may be a US forum and iam unaware if diagnosis or treatment is different over there, however if anyone has any advice or knows first hand how atypical cf can affect an children and individuals, I would appreciate hearing from them.
thanks katie
 
K

katzyloo

New member
Hi I am a young mum from Edinburgh in Scotland, UK. Yestarday it was confirmed by cf staff at the royal sick kids edinburgh my son has atypical cf. He is 6 weeks old and presents no cf symptoms at present. His stool sample has come back negative and staff have said it appears he is pancreas sufficient at the moment, his sweat test was positive with levels of 75.
<br />After searching the web, Iam struggling to find any info on atypical cf that i feel i can fully trust.
<br />Also i think this may be a US forum and iam unaware if diagnosis or treatment is different over there, however if anyone has any advice or knows first hand how atypical cf can affect an children and individuals, I would appreciate hearing from them.
<br />thanks katie
 
T

TonyaH

Guest
Hi Katie,
I am sorry to hear about your son's diagnosis. We have all been in your shoes and know how uncertain and scary this is in the beginning. It does get better as you learn more and talk to others.

I cannot offer much regarding atypical CF because my son's CF is not classified as atypical. However, I can tell you that CF is CF, and every case takes its own course. No two patients present exactly the same way and disease progression cannot be predicted regardless of classifications, mutations, etc. The best thing you can do is find a doctor that is proactive in treatment, knowledgeable about research, and listens to you and makes you part of your son's care team. You will be amazed by how much medical knowledge you will gain in dealing with CF.

Feel free to ask any questions you have here on this website. Everyone here is pretty eager to help. We look forward to hearing more from you, and I wish your son well!
 
T

TonyaH

Guest
Hi Katie,
I am sorry to hear about your son's diagnosis. We have all been in your shoes and know how uncertain and scary this is in the beginning. It does get better as you learn more and talk to others.

I cannot offer much regarding atypical CF because my son's CF is not classified as atypical. However, I can tell you that CF is CF, and every case takes its own course. No two patients present exactly the same way and disease progression cannot be predicted regardless of classifications, mutations, etc. The best thing you can do is find a doctor that is proactive in treatment, knowledgeable about research, and listens to you and makes you part of your son's care team. You will be amazed by how much medical knowledge you will gain in dealing with CF.

Feel free to ask any questions you have here on this website. Everyone here is pretty eager to help. We look forward to hearing more from you, and I wish your son well!
 
T

TonyaH

Guest
Hi Katie,
<br />I am sorry to hear about your son's diagnosis. We have all been in your shoes and know how uncertain and scary this is in the beginning. It does get better as you learn more and talk to others.
<br />
<br />I cannot offer much regarding atypical CF because my son's CF is not classified as atypical. However, I can tell you that CF is CF, and every case takes its own course. No two patients present exactly the same way and disease progression cannot be predicted regardless of classifications, mutations, etc. The best thing you can do is find a doctor that is proactive in treatment, knowledgeable about research, and listens to you and makes you part of your son's care team. You will be amazed by how much medical knowledge you will gain in dealing with CF.
<br />
<br />Feel free to ask any questions you have here on this website. Everyone here is pretty eager to help. We look forward to hearing more from you, and I wish your son well!
 
M

Mommafirst

Guest
Hello Katie,

I'm so very sorry that you are in this place. My daughter was diagnosed very young as well, and it was such a very very hard time. It will get easier. You will learn a new language and reset your needs and expectations, it won't be easy, but it will get easier.

My daughter is pancreatic sufficient, but still has had gi and cf issues crop up. Originally we were told that my daughter's CF may not be "typical" but they have abandoned that way of thinking. We don't discuss typical or not typical. Ultimately CF is Cf, and it is different for everyone -- treat your child, but preventative care is ESSENTIAL with this disease. EVEN if they won't present with ANYTHING for many many years.

Atypical CF is merely a diagnostic tool for CF that isn't diagnosed completely in the normal way -- it does not predict outcome. NOthing with CF can predict outcome. But the fact is your son is doing well -- this is great!!! It gives you time to learn about CF and find the best ways to help him over time.
 
M

Mommafirst

Guest
Hello Katie,

I'm so very sorry that you are in this place. My daughter was diagnosed very young as well, and it was such a very very hard time. It will get easier. You will learn a new language and reset your needs and expectations, it won't be easy, but it will get easier.

My daughter is pancreatic sufficient, but still has had gi and cf issues crop up. Originally we were told that my daughter's CF may not be "typical" but they have abandoned that way of thinking. We don't discuss typical or not typical. Ultimately CF is Cf, and it is different for everyone -- treat your child, but preventative care is ESSENTIAL with this disease. EVEN if they won't present with ANYTHING for many many years.

Atypical CF is merely a diagnostic tool for CF that isn't diagnosed completely in the normal way -- it does not predict outcome. NOthing with CF can predict outcome. But the fact is your son is doing well -- this is great!!! It gives you time to learn about CF and find the best ways to help him over time.
 
M

Mommafirst

Guest
Hello Katie,
<br />
<br />I'm so very sorry that you are in this place. My daughter was diagnosed very young as well, and it was such a very very hard time. It will get easier. You will learn a new language and reset your needs and expectations, it won't be easy, but it will get easier.
<br />
<br />My daughter is pancreatic sufficient, but still has had gi and cf issues crop up. Originally we were told that my daughter's CF may not be "typical" but they have abandoned that way of thinking. We don't discuss typical or not typical. Ultimately CF is Cf, and it is different for everyone -- treat your child, but preventative care is ESSENTIAL with this disease. EVEN if they won't present with ANYTHING for many many years.
<br />
<br />Atypical CF is merely a diagnostic tool for CF that isn't diagnosed completely in the normal way -- it does not predict outcome. NOthing with CF can predict outcome. But the fact is your son is doing well -- this is great!!! It gives you time to learn about CF and find the best ways to help him over time.
 
T

tacos99

New member
Hi Katie, congratulations on your new young man. I am so sorry about the diagnosis though. As Tonya says we all understand and have all been there. I also don't know anything about atypical CF. I wonder if it has been designated that way because he in pancreatic sufficient. My daughter is also PS. No enzymes is a real blessing but I do know this can change and they can become PI(pancreatic insufficient). She is almost 11 (B'day is Sept. 7) and was not diagnosed until 9 years old. She was diagnosed because of a sinus infection. Other than that she had never been sick. In the last 1.5 years she has had a few infections and needed IVs twice. This is Shelby's experience with her CF but every child and adult is different, even family members have different progressions.
I would continue to do what you are doing. Research, ask questions, ask questions, ask questions. You will be more comfortable with it when you know more. The old saying Knowledge is Power is trite but true.
Also, this is a forum for everyone effected by CF with people mainly from America but also from UK, Canada, Australia, etc but I have noticed when I visit the CF Trust forums (UK) that there are some variables in treatment, so you might want to check them out as well. Welcome and again congratulations on your new little one.
 
T

tacos99

New member
Hi Katie, congratulations on your new young man. I am so sorry about the diagnosis though. As Tonya says we all understand and have all been there. I also don't know anything about atypical CF. I wonder if it has been designated that way because he in pancreatic sufficient. My daughter is also PS. No enzymes is a real blessing but I do know this can change and they can become PI(pancreatic insufficient). She is almost 11 (B'day is Sept. 7) and was not diagnosed until 9 years old. She was diagnosed because of a sinus infection. Other than that she had never been sick. In the last 1.5 years she has had a few infections and needed IVs twice. This is Shelby's experience with her CF but every child and adult is different, even family members have different progressions.
I would continue to do what you are doing. Research, ask questions, ask questions, ask questions. You will be more comfortable with it when you know more. The old saying Knowledge is Power is trite but true.
Also, this is a forum for everyone effected by CF with people mainly from America but also from UK, Canada, Australia, etc but I have noticed when I visit the CF Trust forums (UK) that there are some variables in treatment, so you might want to check them out as well. Welcome and again congratulations on your new little one.
 
T

tacos99

New member
Hi Katie, congratulations on your new young man. I am so sorry about the diagnosis though. As Tonya says we all understand and have all been there. I also don't know anything about atypical CF. I wonder if it has been designated that way because he in pancreatic sufficient. My daughter is also PS. No enzymes is a real blessing but I do know this can change and they can become PI(pancreatic insufficient). She is almost 11 (B'day is Sept. 7) and was not diagnosed until 9 years old. She was diagnosed because of a sinus infection. Other than that she had never been sick. In the last 1.5 years she has had a few infections and needed IVs twice. This is Shelby's experience with her CF but every child and adult is different, even family members have different progressions.
<br />I would continue to do what you are doing. Research, ask questions, ask questions, ask questions. You will be more comfortable with it when you know more. The old saying Knowledge is Power is trite but true.
<br />Also, this is a forum for everyone effected by CF with people mainly from America but also from UK, Canada, Australia, etc but I have noticed when I visit the CF Trust forums (UK) that there are some variables in treatment, so you might want to check them out as well. Welcome and again congratulations on your new little one.
 
R

Ratatosk

Administrator
Staff member
Katie,

Craig aka Dyza is from Scotland and posts on here from time to time. Here's a link to his blog -- which is listed under dyza.

<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/index.cfm?forumid=36
">http://blogs.cysticfibrosis.com/index.cfm?forumid=36
</a>
I seem to recall that not only does is his son basically asymptomatic, but that it was determined that he as well has two CF mutations.

Please don't be shy about asking questions or making comments. Also remember that despite the CF diagnosis, that he's STILL a normal little boy who can do anything a child without cf can do. You just need to be a bit more proactive in terms of his health, to make sure he remains a happy healthy little boy.
 
R

Ratatosk

Administrator
Staff member
Katie,

Craig aka Dyza is from Scotland and posts on here from time to time. Here's a link to his blog -- which is listed under dyza.

<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/index.cfm?forumid=36
">http://blogs.cysticfibrosis.com/index.cfm?forumid=36
</a>
I seem to recall that not only does is his son basically asymptomatic, but that it was determined that he as well has two CF mutations.

Please don't be shy about asking questions or making comments. Also remember that despite the CF diagnosis, that he's STILL a normal little boy who can do anything a child without cf can do. You just need to be a bit more proactive in terms of his health, to make sure he remains a happy healthy little boy.
 
R

Ratatosk

Administrator
Staff member
Katie,
<br />
<br />Craig aka Dyza is from Scotland and posts on here from time to time. Here's a link to his blog -- which is listed under dyza.
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/index.cfm?forumid=36
">http://blogs.cysticfibrosis.com/index.cfm?forumid=36
</a><br />
<br />I seem to recall that not only does is his son basically asymptomatic, but that it was determined that he as well has two CF mutations.
<br />
<br />Please don't be shy about asking questions or making comments. Also remember that despite the CF diagnosis, that he's STILL a normal little boy who can do anything a child without cf can do. You just need to be a bit more proactive in terms of his health, to make sure he remains a happy healthy little boy.
 
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