Combination of 2184insA & Delta F508

A

arbrown5676

New member
My daughter, Raegan, was diagnosed with CF at 3 1/2 weeks old. She is now 4 months old. She just started taking enzymes last month. She was having trouble with them, her body just passed out the "sprinkles" in her stool (Creon 5). She got put on a new kind, so far so good. She maintains weight well. She weighed 7LBS 4OZ at birth and now weights 13LBS and 3OZ. I was wondering if those who have the same combination of the mutations 2184insA & Delta F508 could write me and let me know what your symptoms are. I would like to know what to expect so I can stay on top of everything. Also, I would like to know if anyone knows how to start a foundation. I want to start one up in honor of my daughter to raise money for research. Thanks!!

Raegan's Mom
 
A

arbrown5676

New member
My daughter, Raegan, was diagnosed with CF at 3 1/2 weeks old. She is now 4 months old. She just started taking enzymes last month. She was having trouble with them, her body just passed out the "sprinkles" in her stool (Creon 5). She got put on a new kind, so far so good. She maintains weight well. She weighed 7LBS 4OZ at birth and now weights 13LBS and 3OZ. I was wondering if those who have the same combination of the mutations 2184insA & Delta F508 could write me and let me know what your symptoms are. I would like to know what to expect so I can stay on top of everything. Also, I would like to know if anyone knows how to start a foundation. I want to start one up in honor of my daughter to raise money for research. Thanks!!

Raegan's Mom
 
A

arbrown5676

New member
My daughter, Raegan, was diagnosed with CF at 3 1/2 weeks old. She is now 4 months old. She just started taking enzymes last month. She was having trouble with them, her body just passed out the "sprinkles" in her stool (Creon 5). She got put on a new kind, so far so good. She maintains weight well. She weighed 7LBS 4OZ at birth and now weights 13LBS and 3OZ. I was wondering if those who have the same combination of the mutations 2184insA & Delta F508 could write me and let me know what your symptoms are. I would like to know what to expect so I can stay on top of everything. Also, I would like to know if anyone knows how to start a foundation. I want to start one up in honor of my daughter to raise money for research. Thanks!!

Raegan's Mom
 
A

arbrown5676

New member
My daughter, Raegan, was diagnosed with CF at 3 1/2 weeks old. She is now 4 months old. She just started taking enzymes last month. She was having trouble with them, her body just passed out the "sprinkles" in her stool (Creon 5). She got put on a new kind, so far so good. She maintains weight well. She weighed 7LBS 4OZ at birth and now weights 13LBS and 3OZ. I was wondering if those who have the same combination of the mutations 2184insA & Delta F508 could write me and let me know what your symptoms are. I would like to know what to expect so I can stay on top of everything. Also, I would like to know if anyone knows how to start a foundation. I want to start one up in honor of my daughter to raise money for research. Thanks!!

Raegan's Mom
 
A

arbrown5676

New member
My daughter, Raegan, was diagnosed with CF at 3 1/2 weeks old. She is now 4 months old. She just started taking enzymes last month. She was having trouble with them, her body just passed out the "sprinkles" in her stool (Creon 5). She got put on a new kind, so far so good. She maintains weight well. She weighed 7LBS 4OZ at birth and now weights 13LBS and 3OZ. I was wondering if those who have the same combination of the mutations 2184insA & Delta F508 could write me and let me know what your symptoms are. I would like to know what to expect so I can stay on top of everything. Also, I would like to know if anyone knows how to start a foundation. I want to start one up in honor of my daughter to raise money for research. Thanks!!
<br />
<br />Raegan's Mom
 
M

Mommafirst

Guest
Hi Raegan's Mom,

My daughter has CF, but not that combination of mutations. My daughter is doing very well, just struggling to gain weight. In the 2 and a half years I've been doing this, I've learned that while it is tempting to want to get other's symptoms as a comparison, every CF is different. Two siblings with the exact same mutation combination can (and have) fare differently with this disease. I've read stories about siblings where one is living in their 20's or 30's and doing well, but lost a sibling to CF in their teens. <img src="i/expressions/face-icon-small-sad.gif" border="0"> CF is confusing. I'm so sorry you have to be a part of this world, but I'm glad you found us. This board can be extremely helpful.
 
M

Mommafirst

Guest
Hi Raegan's Mom,

My daughter has CF, but not that combination of mutations. My daughter is doing very well, just struggling to gain weight. In the 2 and a half years I've been doing this, I've learned that while it is tempting to want to get other's symptoms as a comparison, every CF is different. Two siblings with the exact same mutation combination can (and have) fare differently with this disease. I've read stories about siblings where one is living in their 20's or 30's and doing well, but lost a sibling to CF in their teens. <img src="i/expressions/face-icon-small-sad.gif" border="0"> CF is confusing. I'm so sorry you have to be a part of this world, but I'm glad you found us. This board can be extremely helpful.
 
M

Mommafirst

Guest
Hi Raegan's Mom,

My daughter has CF, but not that combination of mutations. My daughter is doing very well, just struggling to gain weight. In the 2 and a half years I've been doing this, I've learned that while it is tempting to want to get other's symptoms as a comparison, every CF is different. Two siblings with the exact same mutation combination can (and have) fare differently with this disease. I've read stories about siblings where one is living in their 20's or 30's and doing well, but lost a sibling to CF in their teens. <img src="i/expressions/face-icon-small-sad.gif" border="0"> CF is confusing. I'm so sorry you have to be a part of this world, but I'm glad you found us. This board can be extremely helpful.
 
M

Mommafirst

Guest
Hi Raegan's Mom,

My daughter has CF, but not that combination of mutations. My daughter is doing very well, just struggling to gain weight. In the 2 and a half years I've been doing this, I've learned that while it is tempting to want to get other's symptoms as a comparison, every CF is different. Two siblings with the exact same mutation combination can (and have) fare differently with this disease. I've read stories about siblings where one is living in their 20's or 30's and doing well, but lost a sibling to CF in their teens. <img src="i/expressions/face-icon-small-sad.gif" border="0"> CF is confusing. I'm so sorry you have to be a part of this world, but I'm glad you found us. This board can be extremely helpful.
 
M

Mommafirst

Guest
Hi Raegan's Mom,
<br />
<br />My daughter has CF, but not that combination of mutations. My daughter is doing very well, just struggling to gain weight. In the 2 and a half years I've been doing this, I've learned that while it is tempting to want to get other's symptoms as a comparison, every CF is different. Two siblings with the exact same mutation combination can (and have) fare differently with this disease. I've read stories about siblings where one is living in their 20's or 30's and doing well, but lost a sibling to CF in their teens. <img src="i/expressions/face-icon-small-sad.gif" border="0"> CF is confusing. I'm so sorry you have to be a part of this world, but I'm glad you found us. This board can be extremely helpful.
 
N

nardi99

New member
HI! I know your blog was old - not sure if you are still using this website or reviewing any info on it.
My daughter is Reese - born 3/26/10 with 2184insA & Delta F508. I know you were looking for "older" patients with this mutation to find out how CF affected them, but would love to "discuss" our kiddos with you!!
AND, what's funny - I REALLY wanted REESE to be REAGAN (but my hubby and 2 other kids LOVED the name Reese and they won out!!)
Anyway - please respond back to me if you are interested, and I will then give you my home e-mail.
THANKS!! and hope all is well.
Renee'
 
N

nardi99

New member
HI! I know your blog was old - not sure if you are still using this website or reviewing any info on it.
My daughter is Reese - born 3/26/10 with 2184insA & Delta F508. I know you were looking for "older" patients with this mutation to find out how CF affected them, but would love to "discuss" our kiddos with you!!
AND, what's funny - I REALLY wanted REESE to be REAGAN (but my hubby and 2 other kids LOVED the name Reese and they won out!!)
Anyway - please respond back to me if you are interested, and I will then give you my home e-mail.
THANKS!! and hope all is well.
Renee'
 
T

tacos99

New member
Renee, my daughter also has 2184insA and df508. Shelby is 12 now and was diagnosed at 9 years old after a nose bleed indicated blocked sinuses (no polyps), Until this time she had not been sick at all. Not even a bad cold. She is PS but has liver issues and has recently started having probllems with pancreatitis. Her lung function is very good and she is very active. PM me and I'll be glad to answer any questions that I can about Shelby's experiences. I hope Reese is doing very well.
 
T

tacos99

New member
Renee, my daughter also has 2184insA and df508. Shelby is 12 now and was diagnosed at 9 years old after a nose bleed indicated blocked sinuses (no polyps), Until this time she had not been sick at all. Not even a bad cold. She is PS but has liver issues and has recently started having probllems with pancreatitis. Her lung function is very good and she is very active. PM me and I'll be glad to answer any questions that I can about Shelby's experiences. I hope Reese is doing very well.
 
J

johnmadson

Guest
Hi,

my son was born about 3 month ago with meconium ilues. His mutations are Delta F508 and 2184insA.
He is PI and he has serius problems with his gall. we are affraid of liver cirrhosis. He already had Pseudomonas in his lung but we managed to get rid of it.

Could someone give us some promising words?

Thanks!
 
J

johnmadson

Guest
Hi,

my son was born about 3 month ago with meconium ilues. His mutations are Delta F508 and 2184insA.
He is PI and he has serius problems with his gall. we are affraid of liver cirrhosis. He already had Pseudomonas in his lung but we managed to get rid of it.

Could someone give us some promising words?

Thanks!
 
C

Carriekit

Guest
My daughter was diagnosed with CF at 11 months old, and has the 2184insA and Delta F508 combination. She is now almost 8. Each person has a unique response to the disease, but I can tell you a little about my daughter. She is very active. She grows and gains weight slowly, but holds on to the 50% in both height and weight. Sometimes, she'll lose as much as three pounds and gradually, gradually gain it back. She has developed a cough over the past year that we can't seem to back down. Some days, she won't cough at all, but other days there will be quite a few coughs. It's difficult to determine the triggers, be it the weather or infection. Windy, dusty conditions here in the Dallas, Texas area seem to make it worse. She has had elevated liver enzymes in the past, but they seem to be fine now. She plays soccer, and is one of the best on her team. She is also active in Dance and Gymnastics. We school at home, but are members of a large co-op group. This works really, really well for us. When I sent her to public school activities one summer, I found that she didn't eat lunch. Her saliva doesn't seem to break down food as quickly as normal, and it takes her a long time to eat. Her doctors shrugged when I posed the saliva question, so I don't know if it's CF related, but lemon in her water seems to help. Home-schooling allows us the flexibilty of meeting her medical, social and educational needs on a schedule that works for us. It's comforting to know of others who have her genetic combination, even if some of the symptoms might be different. Feel free to contact me anytime.
 
J

jim17

New member
Hope!

johnmadson said:
Hi,

my son was born about 3 month ago with meconium ilues. His mutations are Delta F508 and 2184insA.
He is PI and he has serius problems with his gall. we are affraid of liver cirrhosis. He already had Pseudomonas in his lung but we managed to get rid of it.

Could someone give us some promising words?

Thanks!
Click to expand...

My wife and I have two sons with CF with F508del and 2184insA. Our youngest was diagnosed at 6 months and our oldest at 3 1/2 in a sibling test. Our oldest is now 40 and is engaged to be married. Our youngest is 37, married for 15 years and he and his wife have two adopted boys. There have been some bumps along the way but both men are currently active and doing well!

Both boys were active in soccer and on their high school varsity soccer teams.
 
A

Asmith62

New member
I know every CF case is different, but this story gives my husband and I hope! What kinds of bumps in the road did you experience with your kids? Our son has the phenotype, Df508 and 2184 insA as well. He is 3 months old with no symptoms yet.
 
You must log in or register to reply here.
Top