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Raising Special Needs Kids Raising Special Needs Kids

Systic Fibrosis .....

Posted by on Aug. 23, 2012 at 12:39 PM
  • 37 Replies

 Anyones child have it & can you explain what it is?

How they were diaganosed with it?


Etc... Etc...

Any information will be helpful .... Thanks!!

 

 

by on Aug. 23, 2012 at 12:39 PM
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Replies (1-10):
lifeisajoy
by on Aug. 23, 2012 at 1:20 PM

Bump but for sure know mom that is very active in this group that does and I am sure she will reply to you within the next day or two

mom18103
by Lisa on Aug. 23, 2012 at 1:48 PM

 Thanx

Quoting mom18103:

 Anyones child have it & can you explain what it is?

How they were diaganosed with it?


Etc... Etc...

Any information will be helpful .... Thanks!!

 

 

 

mandee1503
by Amanda on Aug. 23, 2012 at 4:32 PM

Yep Darby! She is very helpful when it comes to teaching about cystic fibrosis! She'll be around soon I'm sure!

mom18103
by Lisa on Aug. 23, 2012 at 5:24 PM

 Thanx

Quoting mom18103:

 Anyones child have it & can you explain what it is?

How they were diaganosed with it?


Etc... Etc...

Any information will be helpful .... Thanks!!

 

 

 

darbyakeep45
by Darby on Aug. 23, 2012 at 7:47 PM
1 mom liked this

Welcome to the group mama!  My 3.5 year old son has Cystic Fibrosis.  It's a genetic disease where mucus builds up in the lungs and digestive system.  It's a progressive disease with no cure and an average life expectancy of about 37 years old.  My son does almost 2 hours of breathing treatments and chest physio therapy treatments each day to clear his lungs of mucus.  He takes 10 different medications each day as well.  He's fed primarily through a g-tube as he doesn't eat enough food by mouth to stay healthy.  Brady also has Autism, Aarskog Syndrome, 16p Chromosome Duplication, and Brain Damage.  So he has other issues in addition to CF as well.

Let me know what questions you might have!  If I can't answer them I will definitely find the answer and get back with you!

darbyakeep45
by Darby on Aug. 23, 2012 at 7:50 PM

CF is a genetic disease so BOTH parents HAVE to be carriers of the gene in order for the child to have a 25% chance of having CF.  When I was pregnant, my quad screening test came back positive, and after further testing, they realized that CF could be a diagnosis for my son.  He had a bright bowel and was very small for his gestional age.  He had intrauterine growth restriction.  Once they mentioned CF to me, I got tested to see if I was a carrier, and I was, so then my husband was tested and he was.  At that point, we knew the chance of my son having CF was really more than 25% as he had other markers, so we had an amnio to confirm his diagnosis, and he indeed had CF.  We found out when I was about 30 weeks pregnant.   

mom18103
by Lisa on Aug. 23, 2012 at 9:53 PM

 Thank u so much for the info my son has down syndrome & hirschsprung's disease but he just started having pains in his testicles when we went for tests they found that is epididium is missing (that happens to be a male part) the dr. is a little puzzled why this is & said it could be a sign of CF. If either of us are carriers I do not know but am more than willing to find out. We have an appointment to go for a sweat test on August 29th. Nico is 7 by the way & really hasn't shown any signs but if it turns out it is not CF we still need to figure out what happened as far as the epididium is concerned. If he wasn't born with an eppididum I guess we just have nothing else to go on but I sometimes get angry because he should have that choice as a man to be able to have children!!! I know, it sounds selfish but it does kind of make me angry!! I will love him forever & will do whatever I need to for him but sometimes feel lost in a shuffle.

Quoting mom18103:

 Anyones child have it & can you explain what it is?

How they were diaganosed with it?


Etc... Etc...

Any information will be helpful .... Thanks!!

 

 

 

TammyBrooks
by on Aug. 23, 2012 at 9:54 PM
bump


mom18103
by Lisa on Aug. 23, 2012 at 10:05 PM

 Thank you!!

Quoting darbyakeep45:

Welcome to the group mama!  My 3.5 year old son has Cystic Fibrosis.  It's a genetic disease where mucus builds up in the lungs and digestive system.  It's a progressive disease with no cure and an average life expectancy of about 37 years old.  My son does almost 2 hours of breathing treatments and chest physio therapy treatments each day to clear his lungs of mucus.  He takes 10 different medications each day as well.  He's fed primarily through a g-tube as he doesn't eat enough food by mouth to stay healthy.  Brady also has Autism, Aarskog Syndrome, 16p Chromosome Duplication, and Brain Damage.  So he has other issues in addition to CF as well.

Let me know what questions you might have!  If I can't answer them I will definitely find the answer and get back with you!

 

CameronsMommy23
by on Aug. 23, 2012 at 11:36 PM

 Mine doesn't but Darby would be a great reference for you!

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