could this be CF???

B

bayleesmummy

New member
i am seeing his ped GI in 3 weeks and will bring this up then. over here in australia they seem to think CF is a lung issue not a GI issue and they apparently have to be delayed in development to have it. i have asked e few peads but i just get oh i dont think so... i dont think i will get my way with the testing but we will see. i have been constantly researching what could be my sons chronic problem and this is the only disease i can find. i am hopeing its not CF but it is wat it is hey... that sucks that they dont have the full testing over here cuz what if he doesnt have one of the common ones and they dont find it then he goes undiagnosed? what do u do then? thanks for the support everyone.<img src="i/expressions/heart.gif" border="0">
 
B

bayleesmummy

New member
i am seeing his ped GI in 3 weeks and will bring this up then. over here in australia they seem to think CF is a lung issue not a GI issue and they apparently have to be delayed in development to have it. i have asked e few peads but i just get oh i dont think so... i dont think i will get my way with the testing but we will see. i have been constantly researching what could be my sons chronic problem and this is the only disease i can find. i am hopeing its not CF but it is wat it is hey... that sucks that they dont have the full testing over here cuz what if he doesnt have one of the common ones and they dont find it then he goes undiagnosed? what do u do then? thanks for the support everyone.<img src="i/expressions/heart.gif" border="0">
 
J

JazzysMom

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

that sucks that they dont have the full testing over here cuz what if he doesnt have one of the common ones and they dont find it then he goes undiagnosed? what do u do then? thanks for the support everyone.<img src="i/expressions/heart.gif" border="0"></end quote></div>


This is just a thought because I dont know how it works, but maybe you could check with Steve from Ambry Genetics. Maybe he has a thought of how to get an extended panel, but you probably would have to pay out of pocket. I have heard then Ambry works with people on payments. I dont know if it can happen with you being out of the US. Cant hurt to ask & Steve is a great guy. You can post a message for him using this:


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=12677&enterthread=y
">http://forums.cysticfibrosis.c...d=12677&enterthread=y
</a>

This is the Ambry Genetics thread in the Family Section.
 
J

JazzysMom

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

that sucks that they dont have the full testing over here cuz what if he doesnt have one of the common ones and they dont find it then he goes undiagnosed? what do u do then? thanks for the support everyone.<img src="i/expressions/heart.gif" border="0"></end quote></div>


This is just a thought because I dont know how it works, but maybe you could check with Steve from Ambry Genetics. Maybe he has a thought of how to get an extended panel, but you probably would have to pay out of pocket. I have heard then Ambry works with people on payments. I dont know if it can happen with you being out of the US. Cant hurt to ask & Steve is a great guy. You can post a message for him using this:


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=12677&enterthread=y
">http://forums.cysticfibrosis.c...d=12677&enterthread=y
</a>

This is the Ambry Genetics thread in the Family Section.
 
J

JazzysMom

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

that sucks that they dont have the full testing over here cuz what if he doesnt have one of the common ones and they dont find it then he goes undiagnosed? what do u do then? thanks for the support everyone.<img src="i/expressions/heart.gif" border="0"></end quote></div>


This is just a thought because I dont know how it works, but maybe you could check with Steve from Ambry Genetics. Maybe he has a thought of how to get an extended panel, but you probably would have to pay out of pocket. I have heard then Ambry works with people on payments. I dont know if it can happen with you being out of the US. Cant hurt to ask & Steve is a great guy. You can post a message for him using this:


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=12677&enterthread=y
">http://forums.cysticfibrosis.c...d=12677&enterthread=y
</a>

This is the Ambry Genetics thread in the Family Section.
 
J

JazzysMom

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

that sucks that they dont have the full testing over here cuz what if he doesnt have one of the common ones and they dont find it then he goes undiagnosed? what do u do then? thanks for the support everyone.<img src="i/expressions/heart.gif" border="0"></end quote></div>


This is just a thought because I dont know how it works, but maybe you could check with Steve from Ambry Genetics. Maybe he has a thought of how to get an extended panel, but you probably would have to pay out of pocket. I have heard then Ambry works with people on payments. I dont know if it can happen with you being out of the US. Cant hurt to ask & Steve is a great guy. You can post a message for him using this:


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=12677&enterthread=y
">http://forums.cysticfibrosis.c...d=12677&enterthread=y
</a>

This is the Ambry Genetics thread in the Family Section.
 
J

JazzysMom

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

that sucks that they dont have the full testing over here cuz what if he doesnt have one of the common ones and they dont find it then he goes undiagnosed? what do u do then? thanks for the support everyone.<img src="i/expressions/heart.gif" border="0"></end quote>


This is just a thought because I dont know how it works, but maybe you could check with Steve from Ambry Genetics. Maybe he has a thought of how to get an extended panel, but you probably would have to pay out of pocket. I have heard then Ambry works with people on payments. I dont know if it can happen with you being out of the US. Cant hurt to ask & Steve is a great guy. You can post a message for him using this:


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=12677&enterthread=y
">http://forums.cysticfibrosis.c...d=12677&enterthread=y
</a>

This is the Ambry Genetics thread in the Family Section.
 
J

JazzysMom

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

that sucks that they dont have the full testing over here cuz what if he doesnt have one of the common ones and they dont find it then he goes undiagnosed? what do u do then? thanks for the support everyone.<img src="i/expressions/heart.gif" border="0"></end quote>


This is just a thought because I dont know how it works, but maybe you could check with Steve from Ambry Genetics. Maybe he has a thought of how to get an extended panel, but you probably would have to pay out of pocket. I have heard then Ambry works with people on payments. I dont know if it can happen with you being out of the US. Cant hurt to ask & Steve is a great guy. You can post a message for him using this:


<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=12677&enterthread=y
">http://forums.cysticfibrosis.c...d=12677&enterthread=y
</a>

This is the Ambry Genetics thread in the Family Section.
 
W

wuffles

New member
Where abouts in Australia are you? Most of the major cities have excellent specialised CF doctors, both in hospitals and private. I've found that most GPs are good when it comes to CF and recognise most components (GI, lungs, arthritis, diabetes, etc), I have only had a few exceptions. When they say delayed in development, are you sure they don't mean in size? For example position on the height and weight charts. Delay in development has never been considered as a CF symptom.

Anyway, I'd try the local CF association as I said. They'll give you advice.
 
W

wuffles

New member
Where abouts in Australia are you? Most of the major cities have excellent specialised CF doctors, both in hospitals and private. I've found that most GPs are good when it comes to CF and recognise most components (GI, lungs, arthritis, diabetes, etc), I have only had a few exceptions. When they say delayed in development, are you sure they don't mean in size? For example position on the height and weight charts. Delay in development has never been considered as a CF symptom.

Anyway, I'd try the local CF association as I said. They'll give you advice.
 
W

wuffles

New member
Where abouts in Australia are you? Most of the major cities have excellent specialised CF doctors, both in hospitals and private. I've found that most GPs are good when it comes to CF and recognise most components (GI, lungs, arthritis, diabetes, etc), I have only had a few exceptions. When they say delayed in development, are you sure they don't mean in size? For example position on the height and weight charts. Delay in development has never been considered as a CF symptom.

Anyway, I'd try the local CF association as I said. They'll give you advice.
 
W

wuffles

New member
Where abouts in Australia are you? Most of the major cities have excellent specialised CF doctors, both in hospitals and private. I've found that most GPs are good when it comes to CF and recognise most components (GI, lungs, arthritis, diabetes, etc), I have only had a few exceptions. When they say delayed in development, are you sure they don't mean in size? For example position on the height and weight charts. Delay in development has never been considered as a CF symptom.

Anyway, I'd try the local CF association as I said. They'll give you advice.
 
W

wuffles

New member
Where abouts in Australia are you? Most of the major cities have excellent specialised CF doctors, both in hospitals and private. I've found that most GPs are good when it comes to CF and recognise most components (GI, lungs, arthritis, diabetes, etc), I have only had a few exceptions. When they say delayed in development, are you sure they don't mean in size? For example position on the height and weight charts. Delay in development has never been considered as a CF symptom.

Anyway, I'd try the local CF association as I said. They'll give you advice.
 
W

wuffles

New member
Where abouts in Australia are you? Most of the major cities have excellent specialised CF doctors, both in hospitals and private. I've found that most GPs are good when it comes to CF and recognise most components (GI, lungs, arthritis, diabetes, etc), I have only had a few exceptions. When they say delayed in development, are you sure they don't mean in size? For example position on the height and weight charts. Delay in development has never been considered as a CF symptom.

Anyway, I'd try the local CF association as I said. They'll give you advice.
 
B

bayleesmummy

New member
i am in qld brisbane do u have the number for the cf association or how do i get in contact with them? can they do the tests? no i am pretty sure they meant developmental delays as in milestones cuz they know he was failure to thrive. he is now thriving on ng feeds but has lost weight on ng feeds for months previously. can symptoms like that be cyclic? also when i draw back aspirate from his tummy there is always thick stringy mucous in there. lots and lots of it. is that a cf sign? also in his poos too. also has anyone ever had infections with CF that dont get better fully before they return just as bad despite being on antibiotics? as in double ear infections throat infections and chest infections... sorry for all the questions but i am very interested and would like as much ammo for my docs as possible. thank you.
 
B

bayleesmummy

New member
i am in qld brisbane do u have the number for the cf association or how do i get in contact with them? can they do the tests? no i am pretty sure they meant developmental delays as in milestones cuz they know he was failure to thrive. he is now thriving on ng feeds but has lost weight on ng feeds for months previously. can symptoms like that be cyclic? also when i draw back aspirate from his tummy there is always thick stringy mucous in there. lots and lots of it. is that a cf sign? also in his poos too. also has anyone ever had infections with CF that dont get better fully before they return just as bad despite being on antibiotics? as in double ear infections throat infections and chest infections... sorry for all the questions but i am very interested and would like as much ammo for my docs as possible. thank you.
 
B

bayleesmummy

New member
i am in qld brisbane do u have the number for the cf association or how do i get in contact with them? can they do the tests? no i am pretty sure they meant developmental delays as in milestones cuz they know he was failure to thrive. he is now thriving on ng feeds but has lost weight on ng feeds for months previously. can symptoms like that be cyclic? also when i draw back aspirate from his tummy there is always thick stringy mucous in there. lots and lots of it. is that a cf sign? also in his poos too. also has anyone ever had infections with CF that dont get better fully before they return just as bad despite being on antibiotics? as in double ear infections throat infections and chest infections... sorry for all the questions but i am very interested and would like as much ammo for my docs as possible. thank you.
 
B

bayleesmummy

New member
i am in qld brisbane do u have the number for the cf association or how do i get in contact with them? can they do the tests? no i am pretty sure they meant developmental delays as in milestones cuz they know he was failure to thrive. he is now thriving on ng feeds but has lost weight on ng feeds for months previously. can symptoms like that be cyclic? also when i draw back aspirate from his tummy there is always thick stringy mucous in there. lots and lots of it. is that a cf sign? also in his poos too. also has anyone ever had infections with CF that dont get better fully before they return just as bad despite being on antibiotics? as in double ear infections throat infections and chest infections... sorry for all the questions but i am very interested and would like as much ammo for my docs as possible. thank you.
 
B

bayleesmummy

New member
i am in qld brisbane do u have the number for the cf association or how do i get in contact with them? can they do the tests? no i am pretty sure they meant developmental delays as in milestones cuz they know he was failure to thrive. he is now thriving on ng feeds but has lost weight on ng feeds for months previously. can symptoms like that be cyclic? also when i draw back aspirate from his tummy there is always thick stringy mucous in there. lots and lots of it. is that a cf sign? also in his poos too. also has anyone ever had infections with CF that dont get better fully before they return just as bad despite being on antibiotics? as in double ear infections throat infections and chest infections... sorry for all the questions but i am very interested and would like as much ammo for my docs as possible. thank you.
 
B

bayleesmummy

New member
i am in qld brisbane do u have the number for the cf association or how do i get in contact with them? can they do the tests? no i am pretty sure they meant developmental delays as in milestones cuz they know he was failure to thrive. he is now thriving on ng feeds but has lost weight on ng feeds for months previously. can symptoms like that be cyclic? also when i draw back aspirate from his tummy there is always thick stringy mucous in there. lots and lots of it. is that a cf sign? also in his poos too. also has anyone ever had infections with CF that dont get better fully before they return just as bad despite being on antibiotics? as in double ear infections throat infections and chest infections... sorry for all the questions but i am very interested and would like as much ammo for my docs as possible. thank you.
 
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