A Typical CF

A

amyr

New member
Hi Heather, I am in a similar situation and can totally understand your frustration. I have three kids who are being treated for atypical cf. They all have 2 copies of M470V which is known to alter CFTR function but not considered disease causing. For unknown reasons in my kids it is causing disease. They most likely have another unknown mutation or something else in their genetic make up that is causing this.

I think the unknown can be just as scarey. I don't know if I will ever be settled with this but for right now I don't have a choice.

Have they tried a different reflux medication? The right reflux medication can help the enzymes do their job. We had to try a few different reflux meds with my son before we saw any improvement.

Good luck!!
 
A

amyr

New member
Hi Heather, I am in a similar situation and can totally understand your frustration. I have three kids who are being treated for atypical cf. They all have 2 copies of M470V which is known to alter CFTR function but not considered disease causing. For unknown reasons in my kids it is causing disease. They most likely have another unknown mutation or something else in their genetic make up that is causing this.

I think the unknown can be just as scarey. I don't know if I will ever be settled with this but for right now I don't have a choice.

Have they tried a different reflux medication? The right reflux medication can help the enzymes do their job. We had to try a few different reflux meds with my son before we saw any improvement.

Good luck!!
 
A

amyr

New member
Hi Heather, I am in a similar situation and can totally understand your frustration. I have three kids who are being treated for atypical cf. They all have 2 copies of M470V which is known to alter CFTR function but not considered disease causing. For unknown reasons in my kids it is causing disease. They most likely have another unknown mutation or something else in their genetic make up that is causing this.

I think the unknown can be just as scarey. I don't know if I will ever be settled with this but for right now I don't have a choice.

Have they tried a different reflux medication? The right reflux medication can help the enzymes do their job. We had to try a few different reflux meds with my son before we saw any improvement.

Good luck!!
 
A

amyr

New member
Hi Heather, I am in a similar situation and can totally understand your frustration. I have three kids who are being treated for atypical cf. They all have 2 copies of M470V which is known to alter CFTR function but not considered disease causing. For unknown reasons in my kids it is causing disease. They most likely have another unknown mutation or something else in their genetic make up that is causing this.

I think the unknown can be just as scarey. I don't know if I will ever be settled with this but for right now I don't have a choice.

Have they tried a different reflux medication? The right reflux medication can help the enzymes do their job. We had to try a few different reflux meds with my son before we saw any improvement.

Good luck!!
 
A

amyr

New member
Hi Heather, I am in a similar situation and can totally understand your frustration. I have three kids who are being treated for atypical cf. They all have 2 copies of M470V which is known to alter CFTR function but not considered disease causing. For unknown reasons in my kids it is causing disease. They most likely have another unknown mutation or something else in their genetic make up that is causing this.
<br />
<br />I think the unknown can be just as scarey. I don't know if I will ever be settled with this but for right now I don't have a choice.
<br />
<br />Have they tried a different reflux medication? The right reflux medication can help the enzymes do their job. We had to try a few different reflux meds with my son before we saw any improvement.
<br />
<br />Good luck!!
 
S

sdelorenzo

Guest
Has your son ever tried enzymes to see if it helps him with absorption. I have heard that some drs will do that in your son's situation to see if it helps. Sorry you and your son are having to go through all of this.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
Has your son ever tried enzymes to see if it helps him with absorption. I have heard that some drs will do that in your son's situation to see if it helps. Sorry you and your son are having to go through all of this.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
Has your son ever tried enzymes to see if it helps him with absorption. I have heard that some drs will do that in your son's situation to see if it helps. Sorry you and your son are having to go through all of this.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
Has your son ever tried enzymes to see if it helps him with absorption. I have heard that some drs will do that in your son's situation to see if it helps. Sorry you and your son are having to go through all of this.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
Has your son ever tried enzymes to see if it helps him with absorption. I have heard that some drs will do that in your son's situation to see if it helps. Sorry you and your son are having to go through all of this.
<br />Sharon, mom of Sophia, 6 and Jack, 4 both with cf
 
A

ashleyj2008

New member
Hi,
My name is Ashley. I have a 2 yr old daughter with cf. She was diagnosed at birth. She came out weighing 4lbs 7oz. She needed oxygen right away. She stayed on it until she was 6 months old. She has had 5 surgeries so far. She was in real bad condition her first year but I'm happy to say that she is much better now. Madison (cf) has a few lung issues but mostly pancreatic problems. She is okay for her weight for her age. Just thought I'd let you know a little info about my experience. I was trying to find other people who knows about it. If you would like to write back that's fine. Thank you


Ashley
 
A

ashleyj2008

New member
Hi,
My name is Ashley. I have a 2 yr old daughter with cf. She was diagnosed at birth. She came out weighing 4lbs 7oz. She needed oxygen right away. She stayed on it until she was 6 months old. She has had 5 surgeries so far. She was in real bad condition her first year but I'm happy to say that she is much better now. Madison (cf) has a few lung issues but mostly pancreatic problems. She is okay for her weight for her age. Just thought I'd let you know a little info about my experience. I was trying to find other people who knows about it. If you would like to write back that's fine. Thank you


Ashley
 
A

ashleyj2008

New member
Hi,
My name is Ashley. I have a 2 yr old daughter with cf. She was diagnosed at birth. She came out weighing 4lbs 7oz. She needed oxygen right away. She stayed on it until she was 6 months old. She has had 5 surgeries so far. She was in real bad condition her first year but I'm happy to say that she is much better now. Madison (cf) has a few lung issues but mostly pancreatic problems. She is okay for her weight for her age. Just thought I'd let you know a little info about my experience. I was trying to find other people who knows about it. If you would like to write back that's fine. Thank you


Ashley
 
A

ashleyj2008

New member
Hi,
My name is Ashley. I have a 2 yr old daughter with cf. She was diagnosed at birth. She came out weighing 4lbs 7oz. She needed oxygen right away. She stayed on it until she was 6 months old. She has had 5 surgeries so far. She was in real bad condition her first year but I'm happy to say that she is much better now. Madison (cf) has a few lung issues but mostly pancreatic problems. She is okay for her weight for her age. Just thought I'd let you know a little info about my experience. I was trying to find other people who knows about it. If you would like to write back that's fine. Thank you


Ashley
 
A

ashleyj2008

New member
Hi,
<br />My name is Ashley. I have a 2 yr old daughter with cf. She was diagnosed at birth. She came out weighing 4lbs 7oz. She needed oxygen right away. She stayed on it until she was 6 months old. She has had 5 surgeries so far. She was in real bad condition her first year but I'm happy to say that she is much better now. Madison (cf) has a few lung issues but mostly pancreatic problems. She is okay for her weight for her age. Just thought I'd let you know a little info about my experience. I was trying to find other people who knows about it. If you would like to write back that's fine. Thank you
<br />
<br />
<br /> Ashley
 
C

clawson5104

New member
Hi Heather,
my son is not on enzymes...so far all his tests show him pancreatic sufficient....but he will be 3 in 6/26 and has just made it up to 27 1/2 lbs. his BMI is 15%. He is anemic, has moderate to severe reflux. Sinus/upper respiratory infections are bad fall,winter,early spring. ALOT of constipation. miralax is our best friend...that and the nasal "sucker". When he was diagnosed...atypical cf I was told he should not have any real symptoms of cf, just a possibility of reproductive issues later, but allergies and asthma were already an issue, shouldn't have cf issues. WRONG. he is not as severe as classic cf'ers. but he is not "typical" compared to non-cf'ers. I hope you get answers very soon. have you tried suppliments in his food too? my son will not touch scandishakes or ensure...so we use scandi cal powder in his juice and food. his weight isn't where they want it, but he's finnaly coming up. I know how frustrating it is....no absolute answer on the cf thing. finally our pulmonologist told us.....treat him like he's got classic cf. he may never have that many problems, he may grow out of some of these issues, he may grow into more problems, but treat him like he has classic cf, and you'll have everything covered. :) so that's what we do. and that's how his docs treat him too. so there is always a "head's up" when he's not feeling good.
I really hope you get some answers. there are other diseases that cause pancreatic insufficiency.......i think diabetes is one, crohn's, celiac. Not sure, but those come to mind. keep us informed please......
 
C

clawson5104

New member
Hi Heather,
my son is not on enzymes...so far all his tests show him pancreatic sufficient....but he will be 3 in 6/26 and has just made it up to 27 1/2 lbs. his BMI is 15%. He is anemic, has moderate to severe reflux. Sinus/upper respiratory infections are bad fall,winter,early spring. ALOT of constipation. miralax is our best friend...that and the nasal "sucker". When he was diagnosed...atypical cf I was told he should not have any real symptoms of cf, just a possibility of reproductive issues later, but allergies and asthma were already an issue, shouldn't have cf issues. WRONG. he is not as severe as classic cf'ers. but he is not "typical" compared to non-cf'ers. I hope you get answers very soon. have you tried suppliments in his food too? my son will not touch scandishakes or ensure...so we use scandi cal powder in his juice and food. his weight isn't where they want it, but he's finnaly coming up. I know how frustrating it is....no absolute answer on the cf thing. finally our pulmonologist told us.....treat him like he's got classic cf. he may never have that many problems, he may grow out of some of these issues, he may grow into more problems, but treat him like he has classic cf, and you'll have everything covered. :) so that's what we do. and that's how his docs treat him too. so there is always a "head's up" when he's not feeling good.
I really hope you get some answers. there are other diseases that cause pancreatic insufficiency.......i think diabetes is one, crohn's, celiac. Not sure, but those come to mind. keep us informed please......
 
C

clawson5104

New member
Hi Heather,
my son is not on enzymes...so far all his tests show him pancreatic sufficient....but he will be 3 in 6/26 and has just made it up to 27 1/2 lbs. his BMI is 15%. He is anemic, has moderate to severe reflux. Sinus/upper respiratory infections are bad fall,winter,early spring. ALOT of constipation. miralax is our best friend...that and the nasal "sucker". When he was diagnosed...atypical cf I was told he should not have any real symptoms of cf, just a possibility of reproductive issues later, but allergies and asthma were already an issue, shouldn't have cf issues. WRONG. he is not as severe as classic cf'ers. but he is not "typical" compared to non-cf'ers. I hope you get answers very soon. have you tried suppliments in his food too? my son will not touch scandishakes or ensure...so we use scandi cal powder in his juice and food. his weight isn't where they want it, but he's finnaly coming up. I know how frustrating it is....no absolute answer on the cf thing. finally our pulmonologist told us.....treat him like he's got classic cf. he may never have that many problems, he may grow out of some of these issues, he may grow into more problems, but treat him like he has classic cf, and you'll have everything covered. :) so that's what we do. and that's how his docs treat him too. so there is always a "head's up" when he's not feeling good.
I really hope you get some answers. there are other diseases that cause pancreatic insufficiency.......i think diabetes is one, crohn's, celiac. Not sure, but those come to mind. keep us informed please......
 
C

clawson5104

New member
Hi Heather,
my son is not on enzymes...so far all his tests show him pancreatic sufficient....but he will be 3 in 6/26 and has just made it up to 27 1/2 lbs. his BMI is 15%. He is anemic, has moderate to severe reflux. Sinus/upper respiratory infections are bad fall,winter,early spring. ALOT of constipation. miralax is our best friend...that and the nasal "sucker". When he was diagnosed...atypical cf I was told he should not have any real symptoms of cf, just a possibility of reproductive issues later, but allergies and asthma were already an issue, shouldn't have cf issues. WRONG. he is not as severe as classic cf'ers. but he is not "typical" compared to non-cf'ers. I hope you get answers very soon. have you tried suppliments in his food too? my son will not touch scandishakes or ensure...so we use scandi cal powder in his juice and food. his weight isn't where they want it, but he's finnaly coming up. I know how frustrating it is....no absolute answer on the cf thing. finally our pulmonologist told us.....treat him like he's got classic cf. he may never have that many problems, he may grow out of some of these issues, he may grow into more problems, but treat him like he has classic cf, and you'll have everything covered. :) so that's what we do. and that's how his docs treat him too. so there is always a "head's up" when he's not feeling good.
I really hope you get some answers. there are other diseases that cause pancreatic insufficiency.......i think diabetes is one, crohn's, celiac. Not sure, but those come to mind. keep us informed please......
 
C

clawson5104

New member
Hi Heather,
<br />my son is not on enzymes...so far all his tests show him pancreatic sufficient....but he will be 3 in 6/26 and has just made it up to 27 1/2 lbs. his BMI is 15%. He is anemic, has moderate to severe reflux. Sinus/upper respiratory infections are bad fall,winter,early spring. ALOT of constipation. miralax is our best friend...that and the nasal "sucker". When he was diagnosed...atypical cf I was told he should not have any real symptoms of cf, just a possibility of reproductive issues later, but allergies and asthma were already an issue, shouldn't have cf issues. WRONG. he is not as severe as classic cf'ers. but he is not "typical" compared to non-cf'ers. I hope you get answers very soon. have you tried suppliments in his food too? my son will not touch scandishakes or ensure...so we use scandi cal powder in his juice and food. his weight isn't where they want it, but he's finnaly coming up. I know how frustrating it is....no absolute answer on the cf thing. finally our pulmonologist told us.....treat him like he's got classic cf. he may never have that many problems, he may grow out of some of these issues, he may grow into more problems, but treat him like he has classic cf, and you'll have everything covered. :) so that's what we do. and that's how his docs treat him too. so there is always a "head's up" when he's not feeling good.
<br />I really hope you get some answers. there are other diseases that cause pancreatic insufficiency.......i think diabetes is one, crohn's, celiac. Not sure, but those come to mind. keep us informed please......
 
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