just found out

[pjpereira]

hi all,
i'm Patrick and my son, joshua (5 months old) has just been diagnosed with cf.
We are from malaysia and according to statistics there have only been 16 cases of cf reported as of last year. this makes it a rare disease in our country.
still reeling from the shock. joshua's started on vits adek and creone. he is currently undergoing physio after using the nebulizer (around 4 times a day).
just hope that some of you will share some stories and provide advice on what to expect.
thanks

 

[pjpereira]

hi all,
i'm Patrick and my son, joshua (5 months old) has just been diagnosed with cf.
We are from malaysia and according to statistics there have only been 16 cases of cf reported as of last year. this makes it a rare disease in our country.
still reeling from the shock. joshua's started on vits adek and creone. he is currently undergoing physio after using the nebulizer (around 4 times a day).
just hope that some of you will share some stories and provide advice on what to expect.
thanks

 

[pjpereira]

hi all,
i'm Patrick and my son, joshua (5 months old) has just been diagnosed with cf.
We are from malaysia and according to statistics there have only been 16 cases of cf reported as of last year. this makes it a rare disease in our country.
still reeling from the shock. joshua's started on vits adek and creone. he is currently undergoing physio after using the nebulizer (around 4 times a day).
just hope that some of you will share some stories and provide advice on what to expect.
thanks

 

[eli]

Hi Patrick and welcome <img src="">

I'm sorry to hear about the diagnosis. All i can say is that it will take some time before it all sinks in, i know it took a while a for us and it does get better even though it seems it won't.

Although you have found a great site with many great people and loads of informative information and support. This site has been my life saver.

I'll just give you a little background info on our story. We have a 2yr old daughter with cf, who was diagnosed at 5wks due to MI. She was born 6wks premmie waighing a very tiny (1.3kg). Wow, she has come along way now weighing about (10.3kg) but still only on the 25%centile. lol, its good enough for us.

She has been well since her dieagnosis and had only had two hosptial admissions, one was for some testing ( a bronch), and the other wsn't cf related. It was a middle ear infection, but she was put on iv antis.
Her treatment consists of, 10-12 creon 5"s a day, vitabdecks, 5mls oral antis daily and manul cpt 20mins once a day. Hope this helps.

CF, is a rare conditon 1 in 2000. Although it is the most common genetic condition diagnosed in chn. Our daughter has been diagnosed with Double DF508.

I wish you and your family all the best, and your welcome to ask me any questions you like.

You might want to post this in the adult section, as you would get much more info and replies.

Best wishes to you and your family.

 

[eli]

Hi Patrick and welcome <img src="">

I'm sorry to hear about the diagnosis. All i can say is that it will take some time before it all sinks in, i know it took a while a for us and it does get better even though it seems it won't.

Although you have found a great site with many great people and loads of informative information and support. This site has been my life saver.

I'll just give you a little background info on our story. We have a 2yr old daughter with cf, who was diagnosed at 5wks due to MI. She was born 6wks premmie waighing a very tiny (1.3kg). Wow, she has come along way now weighing about (10.3kg) but still only on the 25%centile. lol, its good enough for us.

She has been well since her dieagnosis and had only had two hosptial admissions, one was for some testing ( a bronch), and the other wsn't cf related. It was a middle ear infection, but she was put on iv antis.
Her treatment consists of, 10-12 creon 5"s a day, vitabdecks, 5mls oral antis daily and manul cpt 20mins once a day. Hope this helps.

CF, is a rare conditon 1 in 2000. Although it is the most common genetic condition diagnosed in chn. Our daughter has been diagnosed with Double DF508.

I wish you and your family all the best, and your welcome to ask me any questions you like.

You might want to post this in the adult section, as you would get much more info and replies.

Best wishes to you and your family.

 

[eli]

Hi Patrick and welcome <img src="">

I'm sorry to hear about the diagnosis. All i can say is that it will take some time before it all sinks in, i know it took a while a for us and it does get better even though it seems it won't.

Although you have found a great site with many great people and loads of informative information and support. This site has been my life saver.

I'll just give you a little background info on our story. We have a 2yr old daughter with cf, who was diagnosed at 5wks due to MI. She was born 6wks premmie waighing a very tiny (1.3kg). Wow, she has come along way now weighing about (10.3kg) but still only on the 25%centile. lol, its good enough for us.

She has been well since her dieagnosis and had only had two hosptial admissions, one was for some testing ( a bronch), and the other wsn't cf related. It was a middle ear infection, but she was put on iv antis.
Her treatment consists of, 10-12 creon 5"s a day, vitabdecks, 5mls oral antis daily and manul cpt 20mins once a day. Hope this helps.

CF, is a rare conditon 1 in 2000. Although it is the most common genetic condition diagnosed in chn. Our daughter has been diagnosed with Double DF508.

I wish you and your family all the best, and your welcome to ask me any questions you like.

You might want to post this in the adult section, as you would get much more info and replies.

Best wishes to you and your family.

 

[JazzysMom]

First of all welcome. I am very glad that you found this site. CF is considered an "orhphan" disease since it is quite rare and unknown compared to things like cancer. The fact that there are even fewer cases where you live might very well limit your exposure to updated info and possible treatment. At lease this site will open up a world of info to you that could help. I wish you the best of luck and keep coming back!

 

[JazzysMom]

First of all welcome. I am very glad that you found this site. CF is considered an "orhphan" disease since it is quite rare and unknown compared to things like cancer. The fact that there are even fewer cases where you live might very well limit your exposure to updated info and possible treatment. At lease this site will open up a world of info to you that could help. I wish you the best of luck and keep coming back!

 

[JazzysMom]

First of all welcome. I am very glad that you found this site. CF is considered an "orhphan" disease since it is quite rare and unknown compared to things like cancer. The fact that there are even fewer cases where you live might very well limit your exposure to updated info and possible treatment. At lease this site will open up a world of info to you that could help. I wish you the best of luck and keep coming back!

 

[Ratatosk]

Sounds like you and your doctors are being proactive -- CPT! Important to keep the lungs clear to prevent infections even if they seem healthy. Easier said than done, but try to focus on enjoying your child and not so much on the CF diagnosis. I was so worried the first year about the future, the diagnosis, what ifs that I feel I missed out on so much of DS's milestones.

Today we do CPT (now vest) three times a day -- 4 if he's under the weather. He's a very busy toddler. Goes to preschool, swimming lessons and gymnastics.

 

[Ratatosk]

Sounds like you and your doctors are being proactive -- CPT! Important to keep the lungs clear to prevent infections even if they seem healthy. Easier said than done, but try to focus on enjoying your child and not so much on the CF diagnosis. I was so worried the first year about the future, the diagnosis, what ifs that I feel I missed out on so much of DS's milestones.

Today we do CPT (now vest) three times a day -- 4 if he's under the weather. He's a very busy toddler. Goes to preschool, swimming lessons and gymnastics.

 

[Ratatosk]

Sounds like you and your doctors are being proactive -- CPT! Important to keep the lungs clear to prevent infections even if they seem healthy. Easier said than done, but try to focus on enjoying your child and not so much on the CF diagnosis. I was so worried the first year about the future, the diagnosis, what ifs that I feel I missed out on so much of DS's milestones.

Today we do CPT (now vest) three times a day -- 4 if he's under the weather. He's a very busy toddler. Goes to preschool, swimming lessons and gymnastics.

 

[pjpereira]

thanks guys. it means a lot to hear from you all. there is no support group of any kind in malaysia. even trying to meet parents of the other kids to see how they are coping is difficult. i left my contact details with the hospital in hope that they might be able to set up a meeting.
only prayers, family and friends can pull us through during these trying times. but after reading some blogs and going through the forums i find that it is not all doom and gloom.
cheers,

 

[pjpereira]

thanks guys. it means a lot to hear from you all. there is no support group of any kind in malaysia. even trying to meet parents of the other kids to see how they are coping is difficult. i left my contact details with the hospital in hope that they might be able to set up a meeting.
only prayers, family and friends can pull us through during these trying times. but after reading some blogs and going through the forums i find that it is not all doom and gloom.
cheers,

 

[pjpereira]

thanks guys. it means a lot to hear from you all. there is no support group of any kind in malaysia. even trying to meet parents of the other kids to see how they are coping is difficult. i left my contact details with the hospital in hope that they might be able to set up a meeting.
only prayers, family and friends can pull us through during these trying times. but after reading some blogs and going through the forums i find that it is not all doom and gloom.
cheers,