Twins with CF?

G

Georgiatwins

New member
Just wondering if there are parents of twins or actual twins out there with CF that could give me some insight into raising twins with CF. I have identical twin girls born 7/7/10 and they were diagnosed through a DNA test at 6 weeks with a double F508 gene mutation. We have already begun enzymes to help with their pancreatic insufficiency and so far lungs are still clear!

Just looking for advice and suggestions from twin Mom's or Twins with this diagnosis <img src="i/expressions/face-icon-small-smile.gif" border="0">

Thanks in advance!

Kelley
 
G

Georgiatwins

New member
Just wondering if there are parents of twins or actual twins out there with CF that could give me some insight into raising twins with CF. I have identical twin girls born 7/7/10 and they were diagnosed through a DNA test at 6 weeks with a double F508 gene mutation. We have already begun enzymes to help with their pancreatic insufficiency and so far lungs are still clear!

Just looking for advice and suggestions from twin Mom's or Twins with this diagnosis <img src="i/expressions/face-icon-small-smile.gif" border="0">

Thanks in advance!

Kelley
 
G

Georgiatwins

New member
Just wondering if there are parents of twins or actual twins out there with CF that could give me some insight into raising twins with CF. I have identical twin girls born 7/7/10 and they were diagnosed through a DNA test at 6 weeks with a double F508 gene mutation. We have already begun enzymes to help with their pancreatic insufficiency and so far lungs are still clear!
<br />
<br />Just looking for advice and suggestions from twin Mom's or Twins with this diagnosis <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Thanks in advance!
<br />
<br />Kelley
 
M

Mommafirst

Guest
Hi and welcome. Sorry about the diagnosis, but knowing will definitely make it a lot easier than having to fight for a diagnosis. I don't have twins, though I have a local friend with 4 year old fraternal twins, both with CF. I really don't have any advice, but I would suggest when you are ready (and I wasn't ready until 3 years aftermy daughter was diagnosed) you should read "The Power of Two". It was written by twin sisters Ana and Isa who both have CF and have both had double lung transplants. They are in their mid thirties and still doing well, from what I've heard. The book is very inspirational and shows you how far we've come with CF treatment. There will also be the special link you have with them as they are identical twin girls too.
 
M

Mommafirst

Guest
Hi and welcome. Sorry about the diagnosis, but knowing will definitely make it a lot easier than having to fight for a diagnosis. I don't have twins, though I have a local friend with 4 year old fraternal twins, both with CF. I really don't have any advice, but I would suggest when you are ready (and I wasn't ready until 3 years aftermy daughter was diagnosed) you should read "The Power of Two". It was written by twin sisters Ana and Isa who both have CF and have both had double lung transplants. They are in their mid thirties and still doing well, from what I've heard. The book is very inspirational and shows you how far we've come with CF treatment. There will also be the special link you have with them as they are identical twin girls too.
 
M

Mommafirst

Guest
Hi and welcome. Sorry about the diagnosis, but knowing will definitely make it a lot easier than having to fight for a diagnosis. I don't have twins, though I have a local friend with 4 year old fraternal twins, both with CF. I really don't have any advice, but I would suggest when you are ready (and I wasn't ready until 3 years aftermy daughter was diagnosed) you should read "The Power of Two". It was written by twin sisters Ana and Isa who both have CF and have both had double lung transplants. They are in their mid thirties and still doing well, from what I've heard. The book is very inspirational and shows you how far we've come with CF treatment. There will also be the special link you have with them as they are identical twin girls too.
 
R

Ratatosk

Administrator
Staff member
There was somebody here with triplets awhile back -- cowentriplets or something like that...
 
R

Ratatosk

Administrator
Staff member
There was somebody here with triplets awhile back -- cowentriplets or something like that...
 
R

Ratatosk

Administrator
Staff member
There was somebody here with triplets awhile back -- cowentriplets or something like that...
 
L

Liza

New member
Yes! Ana and Isa are very inspirational! We know them personally and they are wonderful, positive, and uplifting!

Ana had her second double lung tx in July 07, about two weeks before my Anna' had her first. She recently married and yes, they are both doing very well. They are working on the film version of their book "The power of two". Yes, it is a difficult book to read and you will cry. But to see what they went through, treatments from the "old days" makes you see how far CF has come. I see how treatments have progressed and improved in the last 20 when we were first introduced to this disease called Cystic Fibrosis.

Here is a link to The Power of Two website.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.thepoweroftwomovie.com/home/">http://www.thepoweroftwomovie.com/home/</a>
 
L

Liza

New member
Yes! Ana and Isa are very inspirational! We know them personally and they are wonderful, positive, and uplifting!

Ana had her second double lung tx in July 07, about two weeks before my Anna' had her first. She recently married and yes, they are both doing very well. They are working on the film version of their book "The power of two". Yes, it is a difficult book to read and you will cry. But to see what they went through, treatments from the "old days" makes you see how far CF has come. I see how treatments have progressed and improved in the last 20 when we were first introduced to this disease called Cystic Fibrosis.

Here is a link to The Power of Two website.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.thepoweroftwomovie.com/home/">http://www.thepoweroftwomovie.com/home/</a>
 
L

Liza

New member
Yes! Ana and Isa are very inspirational! We know them personally and they are wonderful, positive, and uplifting!
<br />
<br />Ana had her second double lung tx in July 07, about two weeks before my Anna' had her first. She recently married and yes, they are both doing very well. They are working on the film version of their book "The power of two". Yes, it is a difficult book to read and you will cry. But to see what they went through, treatments from the "old days" makes you see how far CF has come. I see how treatments have progressed and improved in the last 20 when we were first introduced to this disease called Cystic Fibrosis.
<br />
<br />Here is a link to The Power of Two website.
<br />
<br /> <a target=_blank class=ftalternatingbarlinklarge href="http://www.thepoweroftwomovie.com/home/">http://www.thepoweroftwomovie.com/home/</a>
 
G

Georgiatwins

New member
I am about 1/4 of the way through the book. My Mother-in-law found it and I saw it at her house yesterday, so of course, I've picked it up and haven't put it down <img src="i/expressions/face-icon-small-smile.gif" border="0"> I also found Isa on Facebook! I would love to meet them one day and introduce them to my twins! The beginning of the book is SOOO much like the beginning that my girls have had with the intestinal surgery, the colostomy pouch, etc. it's so weird!!

I can't wait until the movie comes out in January! Definitely a must see! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I watched the trailer on it today. They are VERY inspirational and I look forward to finishing the book. With twins...looks like I may have some late night reading <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
G

Georgiatwins

New member
I am about 1/4 of the way through the book. My Mother-in-law found it and I saw it at her house yesterday, so of course, I've picked it up and haven't put it down <img src="i/expressions/face-icon-small-smile.gif" border="0"> I also found Isa on Facebook! I would love to meet them one day and introduce them to my twins! The beginning of the book is SOOO much like the beginning that my girls have had with the intestinal surgery, the colostomy pouch, etc. it's so weird!!

I can't wait until the movie comes out in January! Definitely a must see! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I watched the trailer on it today. They are VERY inspirational and I look forward to finishing the book. With twins...looks like I may have some late night reading <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
G

Georgiatwins

New member
I am about 1/4 of the way through the book. My Mother-in-law found it and I saw it at her house yesterday, so of course, I've picked it up and haven't put it down <img src="i/expressions/face-icon-small-smile.gif" border="0"> I also found Isa on Facebook! I would love to meet them one day and introduce them to my twins! The beginning of the book is SOOO much like the beginning that my girls have had with the intestinal surgery, the colostomy pouch, etc. it's so weird!!
<br />
<br />I can't wait until the movie comes out in January! Definitely a must see! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I watched the trailer on it today. They are VERY inspirational and I look forward to finishing the book. With twins...looks like I may have some late night reading <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

threebabies

Member
Hi have 14 month old twin boys who bothh have cf. My daughter is 2.10 with cf as well. My twins had a rough start. at two months old the both developed facial nerve palsy from vitimin A deficency. One twin developed a bilateral palsy and a week later the other twin developed a unilateral palsy. They are on a regime of enzymes, vitimins and albuteral and chest pt to be proactive. Currently, the boys, nerves in their faces are regenerating. They still have residuals from the paralysis. The doctors are havind a study published about them, due to the fact that this was such a rare occurence among the cf population. The first two years of my daughters life was really uneventful except for taking a regime of enzymes. That is why I chose not to have a cvs. I am not even sure if it would have came up on the cvs because my husbands mutation is not in the top 90. I am going to pick up that book myself. Maybe one day i can get around to reading.

gina
 
T

threebabies

Member
Hi have 14 month old twin boys who bothh have cf. My daughter is 2.10 with cf as well. My twins had a rough start. at two months old the both developed facial nerve palsy from vitimin A deficency. One twin developed a bilateral palsy and a week later the other twin developed a unilateral palsy. They are on a regime of enzymes, vitimins and albuteral and chest pt to be proactive. Currently, the boys, nerves in their faces are regenerating. They still have residuals from the paralysis. The doctors are havind a study published about them, due to the fact that this was such a rare occurence among the cf population. The first two years of my daughters life was really uneventful except for taking a regime of enzymes. That is why I chose not to have a cvs. I am not even sure if it would have came up on the cvs because my husbands mutation is not in the top 90. I am going to pick up that book myself. Maybe one day i can get around to reading.

gina
 
T

threebabies

Member
Hi have 14 month old twin boys who bothh have cf. My daughter is 2.10 with cf as well. My twins had a rough start. at two months old the both developed facial nerve palsy from vitimin A deficency. One twin developed a bilateral palsy and a week later the other twin developed a unilateral palsy. They are on a regime of enzymes, vitimins and albuteral and chest pt to be proactive. Currently, the boys, nerves in their faces are regenerating. They still have residuals from the paralysis. The doctors are havind a study published about them, due to the fact that this was such a rare occurence among the cf population. The first two years of my daughters life was really uneventful except for taking a regime of enzymes. That is why I chose not to have a cvs. I am not even sure if it would have came up on the cvs because my husbands mutation is not in the top 90. I am going to pick up that book myself. Maybe one day i can get around to reading.
<br />
<br />gina
 
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