does anyone hce children w/CF & pectus excavatum w/flaring of lower ribs?/Wrinkly feet as well?

[AlexsMom]

does anyone hce children w/CF & pectus excavatum w/flaring of lower ribs?/Wrinkly feet as well?

Wondering if anyone was aware of a connection between CF and pectus excavatum(sunken,hollow breastbone appearance with bottom ribs flaring out? My daughter has what is known as pectus excavatum-Pulmo Docs. partner came in and saw her when we were in hosp. and noticed it. Any connection w/Cf- and I know I'm losing it, but today my husband agreed-the soles of her feet are not smooth-they look really shriveled-for lack of a better word-when did that happen? I feel like her body is changing so much as she has thinned out and I feel like it's happening very fast. Any feedback? her stomach also gets really bloated and when it goes back down,it looks wrinkly,almost like sagging skin-dropped off fecal samples today...waiting....

 

[AlexsMom]

does anyone hce children w/CF & pectus excavatum w/flaring of lower ribs?/Wrinkly feet as well?

Wondering if anyone was aware of a connection between CF and pectus excavatum(sunken,hollow breastbone appearance with bottom ribs flaring out? My daughter has what is known as pectus excavatum-Pulmo Docs. partner came in and saw her when we were in hosp. and noticed it. Any connection w/Cf- and I know I'm losing it, but today my husband agreed-the soles of her feet are not smooth-they look really shriveled-for lack of a better word-when did that happen? I feel like her body is changing so much as she has thinned out and I feel like it's happening very fast. Any feedback? her stomach also gets really bloated and when it goes back down,it looks wrinkly,almost like sagging skin-dropped off fecal samples today...waiting....

 

[AlexsMom]

does anyone hce children w/CF & pectus excavatum w/flaring of lower ribs?/Wrinkly feet as well?

Wondering if anyone was aware of a connection between CF and pectus excavatum(sunken,hollow breastbone appearance with bottom ribs flaring out? My daughter has what is known as pectus excavatum-Pulmo Docs. partner came in and saw her when we were in hosp. and noticed it. Any connection w/Cf- and I know I'm losing it, but today my husband agreed-the soles of her feet are not smooth-they look really shriveled-for lack of a better word-when did that happen? I feel like her body is changing so much as she has thinned out and I feel like it's happening very fast. Any feedback? her stomach also gets really bloated and when it goes back down,it looks wrinkly,almost like sagging skin-dropped off fecal samples today...waiting....

 

[AlexsMom]

does anyone hce children w/CF & pectus excavatum w/flaring of lower ribs?/Wrinkly feet as well?

Wondering if anyone was aware of a connection between CF and pectus excavatum(sunken,hollow breastbone appearance with bottom ribs flaring out? My daughter has what is known as pectus excavatum-Pulmo Docs. partner came in and saw her when we were in hosp. and noticed it. Any connection w/Cf- and I know I'm losing it, but today my husband agreed-the soles of her feet are not smooth-they look really shriveled-for lack of a better word-when did that happen? I feel like her body is changing so much as she has thinned out and I feel like it's happening very fast. Any feedback? her stomach also gets really bloated and when it goes back down,it looks wrinkly,almost like sagging skin-dropped off fecal samples today...waiting....

 

[AlexsMom]

does anyone hce children w/CF & pectus excavatum w/flaring of lower ribs?/Wrinkly feet as well?

Wondering if anyone was aware of a connection between CF and pectus excavatum(sunken,hollow breastbone appearance with bottom ribs flaring out? My daughter has what is known as pectus excavatum-Pulmo Docs. partner came in and saw her when we were in hosp. and noticed it. Any connection w/Cf- and I know I'm losing it, but today my husband agreed-the soles of her feet are not smooth-they look really shriveled-for lack of a better word-when did that happen? I feel like her body is changing so much as she has thinned out and I feel like it's happening very fast. Any feedback? her stomach also gets really bloated and when it goes back down,it looks wrinkly,almost like sagging skin-dropped off fecal samples today...waiting....

 

[jdprecious]

does anyone hce children w/CF & pectus excavatum w/flaring of lower ribs?/Wrinkly feet as well?

i hate to say this but i can only share my experiences and be truthful in hopes that it can help you in some way... jaelyn at dx had ribs showing ... the child would eat a full adult meal and still be hungry... she looked like a malnourised ethiopian off of feed the children... she ate all day and ribs showed and belly poked out... i even showed the doc and he wrote it off...

secondly, now that she has been dx'd for almost 3 yrs there are a few things i have noticed and have wondered if it was cf related... one of those being how wrinkly she gets in the bath or pool... the ocean, never wrinkly.... bath or pool water within minutes she is wrinkled like a prune and after an hour or so it is painful to her... i have carried her from the pool a time or two because she couldn't walk her feet were so wrinkled...

i dont have any hard facts for you... no advice other than to seek another doc who will do a full ambry.... i dont care what sweats say... i know fraternal african american twins that are just carriers... AND THEY ARE BOTH SYMPTOMATIC.... so please please listen to your heart and your head.... if you think there is something "wrong" 9 times out of 10 .... you are right!!!!

I truly wish you the best and keep us updated... We are praying for you always!!!

Much Love
Jess

 

[jdprecious]

does anyone hce children w/CF & pectus excavatum w/flaring of lower ribs?/Wrinkly feet as well?

i hate to say this but i can only share my experiences and be truthful in hopes that it can help you in some way... jaelyn at dx had ribs showing ... the child would eat a full adult meal and still be hungry... she looked like a malnourised ethiopian off of feed the children... she ate all day and ribs showed and belly poked out... i even showed the doc and he wrote it off...

secondly, now that she has been dx'd for almost 3 yrs there are a few things i have noticed and have wondered if it was cf related... one of those being how wrinkly she gets in the bath or pool... the ocean, never wrinkly.... bath or pool water within minutes she is wrinkled like a prune and after an hour or so it is painful to her... i have carried her from the pool a time or two because she couldn't walk her feet were so wrinkled...

i dont have any hard facts for you... no advice other than to seek another doc who will do a full ambry.... i dont care what sweats say... i know fraternal african american twins that are just carriers... AND THEY ARE BOTH SYMPTOMATIC.... so please please listen to your heart and your head.... if you think there is something "wrong" 9 times out of 10 .... you are right!!!!

I truly wish you the best and keep us updated... We are praying for you always!!!

Much Love
Jess

 

[jdprecious]

does anyone hce children w/CF & pectus excavatum w/flaring of lower ribs?/Wrinkly feet as well?

i hate to say this but i can only share my experiences and be truthful in hopes that it can help you in some way... jaelyn at dx had ribs showing ... the child would eat a full adult meal and still be hungry... she looked like a malnourised ethiopian off of feed the children... she ate all day and ribs showed and belly poked out... i even showed the doc and he wrote it off...

secondly, now that she has been dx'd for almost 3 yrs there are a few things i have noticed and have wondered if it was cf related... one of those being how wrinkly she gets in the bath or pool... the ocean, never wrinkly.... bath or pool water within minutes she is wrinkled like a prune and after an hour or so it is painful to her... i have carried her from the pool a time or two because she couldn't walk her feet were so wrinkled...

i dont have any hard facts for you... no advice other than to seek another doc who will do a full ambry.... i dont care what sweats say... i know fraternal african american twins that are just carriers... AND THEY ARE BOTH SYMPTOMATIC.... so please please listen to your heart and your head.... if you think there is something "wrong" 9 times out of 10 .... you are right!!!!

I truly wish you the best and keep us updated... We are praying for you always!!!

Much Love
Jess

 

[jdprecious]

does anyone hce children w/CF & pectus excavatum w/flaring of lower ribs?/Wrinkly feet as well?

i hate to say this but i can only share my experiences and be truthful in hopes that it can help you in some way... jaelyn at dx had ribs showing ... the child would eat a full adult meal and still be hungry... she looked like a malnourised ethiopian off of feed the children... she ate all day and ribs showed and belly poked out... i even showed the doc and he wrote it off...

secondly, now that she has been dx'd for almost 3 yrs there are a few things i have noticed and have wondered if it was cf related... one of those being how wrinkly she gets in the bath or pool... the ocean, never wrinkly.... bath or pool water within minutes she is wrinkled like a prune and after an hour or so it is painful to her... i have carried her from the pool a time or two because she couldn't walk her feet were so wrinkled...

i dont have any hard facts for you... no advice other than to seek another doc who will do a full ambry.... i dont care what sweats say... i know fraternal african american twins that are just carriers... AND THEY ARE BOTH SYMPTOMATIC.... so please please listen to your heart and your head.... if you think there is something "wrong" 9 times out of 10 .... you are right!!!!

I truly wish you the best and keep us updated... We are praying for you always!!!

Much Love
Jess

 

[jdprecious]

does anyone hce children w/CF & pectus excavatum w/flaring of lower ribs?/Wrinkly feet as well?

i hate to say this but i can only share my experiences and be truthful in hopes that it can help you in some way... jaelyn at dx had ribs showing ... the child would eat a full adult meal and still be hungry... she looked like a malnourised ethiopian off of feed the children... she ate all day and ribs showed and belly poked out... i even showed the doc and he wrote it off...

secondly, now that she has been dx'd for almost 3 yrs there are a few things i have noticed and have wondered if it was cf related... one of those being how wrinkly she gets in the bath or pool... the ocean, never wrinkly.... bath or pool water within minutes she is wrinkled like a prune and after an hour or so it is painful to her... i have carried her from the pool a time or two because she couldn't walk her feet were so wrinkled...

i dont have any hard facts for you... no advice other than to seek another doc who will do a full ambry.... i dont care what sweats say... i know fraternal african american twins that are just carriers... AND THEY ARE BOTH SYMPTOMATIC.... so please please listen to your heart and your head.... if you think there is something "wrong" 9 times out of 10 .... you are right!!!!

I truly wish you the best and keep us updated... We are praying for you always!!!

Much Love
Jess

 

[amber682]

does anyone hce children w/CF & pectus excavatum w/flaring of lower ribs?/Wrinkly feet as well?

Wrinkly feet definately. My family jokes about how fast my son's feet get wrinkly when he takes a bath. His fingers even get pruney from just holding really wet fruit or a freeze-pop. I remember a thread about it, I'll see if I can find a link. Bloating too, since a person with Cf doesn't absorb food properly, especially if they are nt taking enzymes. That certainly can cause bloating.



Edited to add link:<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=10350&highlight_key=y&keyword1=prunning">http://forums.cysticfibrosis.c...ey=y&keyword1=prunning</a>

 

[amber682]

does anyone hce children w/CF & pectus excavatum w/flaring of lower ribs?/Wrinkly feet as well?

Wrinkly feet definately. My family jokes about how fast my son's feet get wrinkly when he takes a bath. His fingers even get pruney from just holding really wet fruit or a freeze-pop. I remember a thread about it, I'll see if I can find a link. Bloating too, since a person with Cf doesn't absorb food properly, especially if they are nt taking enzymes. That certainly can cause bloating.



Edited to add link:<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=10350&highlight_key=y&keyword1=prunning">http://forums.cysticfibrosis.c...ey=y&keyword1=prunning</a>

 

[amber682]

does anyone hce children w/CF & pectus excavatum w/flaring of lower ribs?/Wrinkly feet as well?

Wrinkly feet definately. My family jokes about how fast my son's feet get wrinkly when he takes a bath. His fingers even get pruney from just holding really wet fruit or a freeze-pop. I remember a thread about it, I'll see if I can find a link. Bloating too, since a person with Cf doesn't absorb food properly, especially if they are nt taking enzymes. That certainly can cause bloating.



Edited to add link:<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=10350&highlight_key=y&keyword1=prunning">http://forums.cysticfibrosis.c...ey=y&keyword1=prunning</a>

 

[amber682]

does anyone hce children w/CF & pectus excavatum w/flaring of lower ribs?/Wrinkly feet as well?

Wrinkly feet definately. My family jokes about how fast my son's feet get wrinkly when he takes a bath. His fingers even get pruney from just holding really wet fruit or a freeze-pop. I remember a thread about it, I'll see if I can find a link. Bloating too, since a person with Cf doesn't absorb food properly, especially if they are nt taking enzymes. That certainly can cause bloating.



Edited to add link:<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=10350&highlight_key=y&keyword1=prunning">http://forums.cysticfibrosis.c...ey=y&keyword1=prunning</a>

 

[amber682]

does anyone hce children w/CF & pectus excavatum w/flaring of lower ribs?/Wrinkly feet as well?

Wrinkly feet definately. My family jokes about how fast my son's feet get wrinkly when he takes a bath. His fingers even get pruney from just holding really wet fruit or a freeze-pop. I remember a thread about it, I'll see if I can find a link. Bloating too, since a person with Cf doesn't absorb food properly, especially if they are nt taking enzymes. That certainly can cause bloating.



Edited to add link:<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=10350&highlight_key=y&keyword1=prunning">http://forums.cysticfibrosis.c...ey=y&keyword1=prunning</a>

 

[LisaV]

does anyone hce children w/CF & pectus excavatum w/flaring of lower ribs?/Wrinkly feet as well?

Don't know about pectus excavatum and CF, but PE is common in Marfan Syndrome as are stretch marks for "no reason" ( see <a target=_blank class=ftalternatingbarlinklarge href="http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=4">http://www.marfan.org/nmf/GetC...dler.do?menu_item_id=4</a> ) .
A really quick weight loss can change physical appearance rapidly too.

 

[LisaV]

does anyone hce children w/CF & pectus excavatum w/flaring of lower ribs?/Wrinkly feet as well?

Don't know about pectus excavatum and CF, but PE is common in Marfan Syndrome as are stretch marks for "no reason" ( see <a target=_blank class=ftalternatingbarlinklarge href="http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=4">http://www.marfan.org/nmf/GetC...dler.do?menu_item_id=4</a> ) .
A really quick weight loss can change physical appearance rapidly too.

 

[LisaV]

does anyone hce children w/CF & pectus excavatum w/flaring of lower ribs?/Wrinkly feet as well?

Don't know about pectus excavatum and CF, but PE is common in Marfan Syndrome as are stretch marks for "no reason" ( see <a target=_blank class=ftalternatingbarlinklarge href="http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=4">http://www.marfan.org/nmf/GetC...dler.do?menu_item_id=4</a> ) .
A really quick weight loss can change physical appearance rapidly too.

 

[LisaV]

does anyone hce children w/CF & pectus excavatum w/flaring of lower ribs?/Wrinkly feet as well?

Don't know about pectus excavatum and CF, but PE is common in Marfan Syndrome as are stretch marks for "no reason" ( see <a target=_blank class=ftalternatingbarlinklarge href="http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=4">http://www.marfan.org/nmf/GetC...dler.do?menu_item_id=4</a> ) .
A really quick weight loss can change physical appearance rapidly too.

 

[LisaV]

does anyone hce children w/CF & pectus excavatum w/flaring of lower ribs?/Wrinkly feet as well?

Don't know about pectus excavatum and CF, but PE is common in Marfan Syndrome as are stretch marks for "no reason" ( see <a target=_blank class=ftalternatingbarlinklarge href="http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=4">http://www.marfan.org/nmf/GetC...dler.do?menu_item_id=4</a> ) .
A really quick weight loss can change physical appearance rapidly too.