New in the club... :-(

K

Kaethe108

Guest
Hey there!<br><span style="font-style: italic;">(before I start: please forgive my poor English, I am not a native speaker...)<br><br>My daughter is now three months old and was diagnosed with CF when she was 6 weeks old. The mutations are: <span class="st">?F508/R553X. She is pancreas insufficient and now on Creon. We have to change less diapers, but still they are very smelly and fatty... We also started giving vitamins, but I just learned now about Aquadeks, which is not available in our country, although I can order it on the internet. We will give it a try.<br>Tomorrow we will see the physiotherapeut again who will teach us about inhaling. We will start with 0,9% saline once a day, as our daughter has no respitory problems so far.<br><br>I am very happy to find so much help and support with this disease and try to learn everything. Also I get a lot of hope from the new medicaments that will be on the market within the next few years. Ataluren will probably be able to help our little girl!<br><br>Thanks for sharing!<br><br>Many greetings from Germany,<br>  Kaethe <br><br>
 
K

Kaethe108

Guest
Hey there!<br><span style="font-style: italic;">(before I start: please forgive my poor English, I am not a native speaker...)<br><br>My daughter is now three months old and was diagnosed with CF when she was 6 weeks old. The mutations are: <span class="st">?F508/R553X. She is pancreas insufficient and now on Creon. We have to change less diapers, but still they are very smelly and fatty... We also started giving vitamins, but I just learned now about Aquadeks, which is not available in our country, although I can order it on the internet. We will give it a try.<br>Tomorrow we will see the physiotherapeut again who will teach us about inhaling. We will start with 0,9% saline once a day, as our daughter has no respitory problems so far.<br><br>I am very happy to find so much help and support with this disease and try to learn everything. Also I get a lot of hope from the new medicaments that will be on the market within the next few years. Ataluren will probably be able to help our little girl!<br><br>Thanks for sharing!<br><br>Many greetings from Germany,<br> Kaethe <br><br>
 
K

Kaethe108

Guest
Hey there!<br><span style="font-style: italic;">(before I start: please forgive my poor English, I am not a native speaker...)<br><br>My daughter is now three months old and was diagnosed with CF when she was 6 weeks old. The mutations are: <span class="st">?F508/R553X. She is pancreas insufficient and now on Creon. We have to change less diapers, but still they are very smelly and fatty... We also started giving vitamins, but I just learned now about Aquadeks, which is not available in our country, although I can order it on the internet. We will give it a try.<br>Tomorrow we will see the physiotherapeut again who will teach us about inhaling. We will start with 0,9% saline once a day, as our daughter has no respitory problems so far.<br><br>I am very happy to find so much help and support with this disease and try to learn everything. Also I get a lot of hope from the new medicaments that will be on the market within the next few years. Ataluren will probably be able to help our little girl!<br><br>Thanks for sharing!<br><br>Many greetings from Germany,<br> Kaethe <br><br>
 
M

Mommafirst

Guest
Welcome to the place you never dreamed you would need. The early days of diagnosis are really tough, but there will be bright days ahead. Congratulations on your newborn daughter....enjoy all the wonders of having a new life in your world....the CF stuff will become "normal" eventually.
 
M

Mommafirst

Guest
Welcome to the place you never dreamed you would need. The early days of diagnosis are really tough, but there will be bright days ahead. Congratulations on your newborn daughter....enjoy all the wonders of having a new life in your world....the CF stuff will become "normal" eventually.
 
M

Mommafirst

Guest
Welcome to the place you never dreamed you would need. The early days of diagnosis are really tough, but there will be bright days ahead. Congratulations on your newborn daughter....enjoy all the wonders of having a new life in your world....the CF stuff will become "normal" eventually.
 
K

Kaethe108

Guest
Thanks for your welcome. :)
It is very uplifting to read how "normal" your kids live their lives and that they are able to do almost everything they want!
I've read something great in another forum and I try to always remember this: don't let CF spoil the childhood of your child and the wonderful time you have together.
We have to accept the disease and do everything to fight it, but it should never predominate our lives!
People like you are great examples!
 
K

Kaethe108

Guest
Thanks for your welcome. :)
It is very uplifting to read how "normal" your kids live their lives and that they are able to do almost everything they want!
I've read something great in another forum and I try to always remember this: don't let CF spoil the childhood of your child and the wonderful time you have together.
We have to accept the disease and do everything to fight it, but it should never predominate our lives!
People like you are great examples!
 
K

Kaethe108

Guest
Thanks for your welcome. :)
<br />It is very uplifting to read how "normal" your kids live their lives and that they are able to do almost everything they want!
<br />I've read something great in another forum and I try to always remember this: don't let CF spoil the childhood of your child and the wonderful time you have together.
<br />We have to accept the disease and do everything to fight it, but it should never predominate our lives!
<br />People like you are great examples!
 
R

Ratatosk

Administrator
Staff member
Sorry to have to welcome you to our group. My son was diagnosed as an infant over 8 years ago. Please feel free to ask any questions.
 
R

Ratatosk

Administrator
Staff member
Sorry to have to welcome you to our group. My son was diagnosed as an infant over 8 years ago. Please feel free to ask any questions.
 
R

Ratatosk

Administrator
Staff member
Sorry to have to welcome you to our group. My son was diagnosed as an infant over 8 years ago. Please feel free to ask any questions.
 
A

AleksandraKaczynska

New member
hi Kaethe - we are neighbours - I'm from Poland.
<br>My daughter has the second mutation R533X but her leading one is a milder one.
<br>Conserning AquADEKS - we have trouble buying it here - but we buy through 3 foundations - here are the links
<br>http://jestesmyok.pl/kontakt,5.html - this the one I buy from
<br>and also
<br>http://www.mukowiscydoza.pl/index.php/en/
<br>and sometimes
<br>http://www.ptwm.org.pl/
<br>maybe you can do the same - if not try contacting the first one or I can contact them with you - if you want to.
<br>Where are you from in Germany - we are from Warsaw.
<br>The cf funds here often contact cf centers in germany and Austria since we get bad health care here - but it's improving slowly.
<br>
<br>
<br>
<br>
 
A

AleksandraKaczynska

New member
hi Kaethe - we are neighbours - I'm from Poland.
<br>My daughter has the second mutation R533X but her leading one is a milder one.
<br>Conserning AquADEKS - we have trouble buying it here - but we buy through 3 foundations - here are the links
<br>http://jestesmyok.pl/kontakt,5.html - this the one I buy from
<br>and also
<br>http://www.mukowiscydoza.pl/index.php/en/
<br>and sometimes
<br>http://www.ptwm.org.pl/
<br>maybe you can do the same - if not try contacting the first one or I can contact them with you - if you want to.
<br>Where are you from in Germany - we are from Warsaw.
<br>The cf funds here often contact cf centers in germany and Austria since we get bad health care here - but it's improving slowly.
<br>
<br>
<br>
<br>
 
A

AleksandraKaczynska

New member
hi Kaethe - we are neighbours - I'm from Poland.
<br>My daughter has the second mutation R533X but her leading one is a milder one.
<br>Conserning AquADEKS - we have trouble buying it here - but we buy through 3 foundations - here are the links
<br>http://jestesmyok.pl/kontakt,5.html - this the one I buy from
<br>and also
<br>http://www.mukowiscydoza.pl/index.php/en/
<br>and sometimes
<br>http://www.ptwm.org.pl/
<br>maybe you can do the same - if not try contacting the first one or I can contact them with you - if you want to.
<br>Where are you from in Germany - we are from Warsaw.
<br>The cf funds here often contact cf centers in germany and Austria since we get bad health care here - but it's improving slowly.
<br>
<br>
<br>
<br>
 
K

Kaethe108

Guest
Hi Aleksandra!
Nice to read a "neighbour", although it is still 1300 km between our homes, as we live right next to the French border (exactly 50 metres...) in west Germany.
I now ordered Aquadeks directly from the producer, check out http://www.yasooglobal.com/aquadeks/.
They ship from Cyprus and one bottle (60ml) costs 45 USD.
How much do you pay in Poland?
 
K

Kaethe108

Guest
Hi Aleksandra!
Nice to read a "neighbour", although it is still 1300 km between our homes, as we live right next to the French border (exactly 50 metres...) in west Germany.
I now ordered Aquadeks directly from the producer, check out http://www.yasooglobal.com/aquadeks/.
They ship from Cyprus and one bottle (60ml) costs 45 USD.
How much do you pay in Poland?
 
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