New Mom with Questions for parents with experience

shoot4parr · Jun 24, 2008

My son was diagnosed through genetic testing, and now the CF center is telling me that they still want to do a sweat test is this normal? I would think that it would be pointless and a waste of money. My concern is my stepson. His mother said she was tested with her 3rd pregnancy she is not a carrier. What I tried to explain to her and my boyfriend is that they only test for the the most common so he could have CF still. He has been diagnosed with Asthma and has always been small for his age. He was in and out of the hospital last year and none of the doctors seem to ever be able to put a diagnosis on his illness. He has lots of trouble with is bowels as well. He is 14 so I think it just never crossed anyone's mind but now that his half brother has CF I think all of our boys should be tested. Anyone have any suggestions?

Also wondering if CFers can be mildly pancreatic insufficient and not need enzymes? This is what the clinic told us that his pancrease could funtion 50-75 percent but they never said anthinh about him not needing or needing enzymes. His stools as I have mentions are classic signs of him being insufficient but he is not losing weight.

shoot4parr · Jun 24, 2008

My son was diagnosed through genetic testing, and now the CF center is telling me that they still want to do a sweat test is this normal? I would think that it would be pointless and a waste of money. My concern is my stepson. His mother said she was tested with her 3rd pregnancy she is not a carrier. What I tried to explain to her and my boyfriend is that they only test for the the most common so he could have CF still. He has been diagnosed with Asthma and has always been small for his age. He was in and out of the hospital last year and none of the doctors seem to ever be able to put a diagnosis on his illness. He has lots of trouble with is bowels as well. He is 14 so I think it just never crossed anyone's mind but now that his half brother has CF I think all of our boys should be tested. Anyone have any suggestions?

Also wondering if CFers can be mildly pancreatic insufficient and not need enzymes? This is what the clinic told us that his pancrease could funtion 50-75 percent but they never said anthinh about him not needing or needing enzymes. His stools as I have mentions are classic signs of him being insufficient but he is not losing weight.

shoot4parr · Jun 24, 2008

My son was diagnosed through genetic testing, and now the CF center is telling me that they still want to do a sweat test is this normal? I would think that it would be pointless and a waste of money. My concern is my stepson. His mother said she was tested with her 3rd pregnancy she is not a carrier. What I tried to explain to her and my boyfriend is that they only test for the the most common so he could have CF still. He has been diagnosed with Asthma and has always been small for his age. He was in and out of the hospital last year and none of the doctors seem to ever be able to put a diagnosis on his illness. He has lots of trouble with is bowels as well. He is 14 so I think it just never crossed anyone's mind but now that his half brother has CF I think all of our boys should be tested. Anyone have any suggestions?

Also wondering if CFers can be mildly pancreatic insufficient and not need enzymes? This is what the clinic told us that his pancrease could funtion 50-75 percent but they never said anthinh about him not needing or needing enzymes. His stools as I have mentions are classic signs of him being insufficient but he is not losing weight.

shoot4parr · Jun 24, 2008

My son was diagnosed through genetic testing, and now the CF center is telling me that they still want to do a sweat test is this normal? I would think that it would be pointless and a waste of money. My concern is my stepson. His mother said she was tested with her 3rd pregnancy she is not a carrier. What I tried to explain to her and my boyfriend is that they only test for the the most common so he could have CF still. He has been diagnosed with Asthma and has always been small for his age. He was in and out of the hospital last year and none of the doctors seem to ever be able to put a diagnosis on his illness. He has lots of trouble with is bowels as well. He is 14 so I think it just never crossed anyone's mind but now that his half brother has CF I think all of our boys should be tested. Anyone have any suggestions?

Also wondering if CFers can be mildly pancreatic insufficient and not need enzymes? This is what the clinic told us that his pancrease could funtion 50-75 percent but they never said anthinh about him not needing or needing enzymes. His stools as I have mentions are classic signs of him being insufficient but he is not losing weight.

shoot4parr · Jun 24, 2008

My son was diagnosed through genetic testing, and now the CF center is telling me that they still want to do a sweat test is this normal? I would think that it would be pointless and a waste of money. My concern is my stepson. His mother said she was tested with her 3rd pregnancy she is not a carrier. What I tried to explain to her and my boyfriend is that they only test for the the most common so he could have CF still. He has been diagnosed with Asthma and has always been small for his age. He was in and out of the hospital last year and none of the doctors seem to ever be able to put a diagnosis on his illness. He has lots of trouble with is bowels as well. He is 14 so I think it just never crossed anyone's mind but now that his half brother has CF I think all of our boys should be tested. Anyone have any suggestions?
 
 Also wondering if CFers can be mildly pancreatic insufficient and not need enzymes? This is what the clinic told us that his pancrease could funtion 50-75 percent but they never said anthinh about him not needing or needing enzymes. His stools as I have mentions are classic signs of him being insufficient but he is not losing weight.

RiverRat · Jun 25, 2008

My son too was diagnosed with genetic testing, he recieved a sweat test for the records. He didi not seem to mind at all. It was pretty easy. Our doctor told us they do it for all their CF kids for record purposes, I think they repeat the test each year.

I am hoping to work from home more than before but I see a definite need for daycare. Sorry about your job it sounds like you have alot invested. I admire you for going back to school for nursing, what a noble profession!

RiverRat · Jun 25, 2008

My son too was diagnosed with genetic testing, he recieved a sweat test for the records. He didi not seem to mind at all. It was pretty easy. Our doctor told us they do it for all their CF kids for record purposes, I think they repeat the test each year.

I am hoping to work from home more than before but I see a definite need for daycare. Sorry about your job it sounds like you have alot invested. I admire you for going back to school for nursing, what a noble profession!

RiverRat · Jun 25, 2008

My son too was diagnosed with genetic testing, he recieved a sweat test for the records. He didi not seem to mind at all. It was pretty easy. Our doctor told us they do it for all their CF kids for record purposes, I think they repeat the test each year.

I am hoping to work from home more than before but I see a definite need for daycare. Sorry about your job it sounds like you have alot invested. I admire you for going back to school for nursing, what a noble profession!

RiverRat · Jun 25, 2008

My son too was diagnosed with genetic testing, he recieved a sweat test for the records. He didi not seem to mind at all. It was pretty easy. Our doctor told us they do it for all their CF kids for record purposes, I think they repeat the test each year.

I am hoping to work from home more than before but I see a definite need for daycare. Sorry about your job it sounds like you have alot invested. I admire you for going back to school for nursing, what a noble profession!

RiverRat · Jun 25, 2008

My son too was diagnosed with genetic testing, he recieved a sweat test for the records. He didi not seem to mind at all. It was pretty easy. Our doctor told us they do it for all their CF kids for record purposes, I think they repeat the test each year.
 
 I am hoping to work from home more than before but I see a definite need for daycare. Sorry about your job it sounds like you have alot invested. I admire you for going back to school for nursing, what a noble profession!

shoot4parr · Jul 17, 2008

Ok Sean is got straight A's at the clinic this week. We were thrilled since he lost 20% of his birth wieght the first week and his poops are a little suspect. He is now 15 pounds! He gained 4 1/2 pounds in a month. My question is they told us his fecal elastase came back low even though they were thinking he would be pancreatic sufficient. He is in the 97% and 80% for weight and height respectivly so can this just change over night? Can he start to have weight issues all of a sudden? That is what is scary about this is the unknown and although it doesn't occupy my mind 24/7 like it did in the begining I am hoping that he will now really be sypmtomatic. Now the clinic is also suggesting that our other children be sweat tested but I would thing genetic testing would make more sense to see if they at ever carriers and so that they have and idea of what is going on with they choose to have children later on...any thoughts?
Also when i questionted the clinic on when sean would be able to get a vest, since i have seen more and more 2 year olds with it they told me they don't recommend it until 4 because there is no studies that show it's effectivness before that age and they said manual pt work more effciently. any opinions on this???

shoot4parr · Jul 17, 2008

Ok Sean is got straight A's at the clinic this week. We were thrilled since he lost 20% of his birth wieght the first week and his poops are a little suspect. He is now 15 pounds! He gained 4 1/2 pounds in a month. My question is they told us his fecal elastase came back low even though they were thinking he would be pancreatic sufficient. He is in the 97% and 80% for weight and height respectivly so can this just change over night? Can he start to have weight issues all of a sudden? That is what is scary about this is the unknown and although it doesn't occupy my mind 24/7 like it did in the begining I am hoping that he will now really be sypmtomatic. Now the clinic is also suggesting that our other children be sweat tested but I would thing genetic testing would make more sense to see if they at ever carriers and so that they have and idea of what is going on with they choose to have children later on...any thoughts?
Also when i questionted the clinic on when sean would be able to get a vest, since i have seen more and more 2 year olds with it they told me they don't recommend it until 4 because there is no studies that show it's effectivness before that age and they said manual pt work more effciently. any opinions on this???

shoot4parr · Jul 17, 2008

Ok Sean is got straight A's at the clinic this week. We were thrilled since he lost 20% of his birth wieght the first week and his poops are a little suspect. He is now 15 pounds! He gained 4 1/2 pounds in a month. My question is they told us his fecal elastase came back low even though they were thinking he would be pancreatic sufficient. He is in the 97% and 80% for weight and height respectivly so can this just change over night? Can he start to have weight issues all of a sudden? That is what is scary about this is the unknown and although it doesn't occupy my mind 24/7 like it did in the begining I am hoping that he will now really be sypmtomatic. Now the clinic is also suggesting that our other children be sweat tested but I would thing genetic testing would make more sense to see if they at ever carriers and so that they have and idea of what is going on with they choose to have children later on...any thoughts?
Also when i questionted the clinic on when sean would be able to get a vest, since i have seen more and more 2 year olds with it they told me they don't recommend it until 4 because there is no studies that show it's effectivness before that age and they said manual pt work more effciently. any opinions on this???

shoot4parr · Jul 17, 2008

Ok Sean is got straight A's at the clinic this week. We were thrilled since he lost 20% of his birth wieght the first week and his poops are a little suspect. He is now 15 pounds! He gained 4 1/2 pounds in a month. My question is they told us his fecal elastase came back low even though they were thinking he would be pancreatic sufficient. He is in the 97% and 80% for weight and height respectivly so can this just change over night? Can he start to have weight issues all of a sudden? That is what is scary about this is the unknown and although it doesn't occupy my mind 24/7 like it did in the begining I am hoping that he will now really be sypmtomatic. Now the clinic is also suggesting that our other children be sweat tested but I would thing genetic testing would make more sense to see if they at ever carriers and so that they have and idea of what is going on with they choose to have children later on...any thoughts?
Also when i questionted the clinic on when sean would be able to get a vest, since i have seen more and more 2 year olds with it they told me they don't recommend it until 4 because there is no studies that show it's effectivness before that age and they said manual pt work more effciently. any opinions on this???

shoot4parr · Jul 17, 2008

Ok Sean is got straight A's at the clinic this week. We were thrilled since he lost 20% of his birth wieght the first week and his poops are a little suspect. He is now 15 pounds! He gained 4 1/2 pounds in a month. My question is they told us his fecal elastase came back low even though they were thinking he would be pancreatic sufficient. He is in the 97% and 80% for weight and height respectivly so can this just change over night? Can he start to have weight issues all of a sudden? That is what is scary about this is the unknown and although it doesn't occupy my mind 24/7 like it did in the begining I am hoping that he will now really be sypmtomatic. Now the clinic is also suggesting that our other children be sweat tested but I would thing genetic testing would make more sense to see if they at ever carriers and so that they have and idea of what is going on with they choose to have children later on...any thoughts?
 Also when i questionted the clinic on when sean would be able to get a vest, since i have seen more and more 2 year olds with it they told me they don't recommend it until 4 because there is no studies that show it's effectivness before that age and they said manual pt work more effciently. any opinions on this???

leigh12 · Jul 17, 2008

hi jennifer, i just caught up on this thread. blake was pancreatic sufficent for the first two years of his life. He never lost weight suddenly or had any problems but his dietician would just check his stools every 6 months or so. then just after his 2nd birthday she told us that he was boarderline. So at two he started enzymes and has continued on without a problem since he is still at the 75th percentile for both weight and height. it sounds like your son is similar, he is still digesting his food okay(4 1/2 pounds thats very good) but he may need to start them in the future. i would just keep an eye on him if he is getting belly aches consistantly and he doesn't gain weight, speak to your dr's again.
As for getting the other children tested i think that you are right to go for the genetic testing. just make sure they check not just 98 types they do them all.
I remember the time of diagnosis. i remember thinking that blake would have to spend his whole life in hospital and that he would be constantly sick, and now i think back and laugh at myself. He has his issues but he is a great active normal kid. you sound like you are getting more confident with Cf and that is great. Asking questions and educating yourself will help you and your son. i think that is the one thing i have learnt if i am not sure of something going on with blake i will keep asking until i understand and i am satisfied that he is getting what he needs.
With your boyfriend i would just try and encourage him to do one of his treatments each day. people handle things differently and although it sucks that you feel like you are doing it all at the moment with some encouragement he might come around and help some more.
i hoped i helped
cheers leigh

leigh12 · Jul 17, 2008

hi jennifer, i just caught up on this thread. blake was pancreatic sufficent for the first two years of his life. He never lost weight suddenly or had any problems but his dietician would just check his stools every 6 months or so. then just after his 2nd birthday she told us that he was boarderline. So at two he started enzymes and has continued on without a problem since he is still at the 75th percentile for both weight and height. it sounds like your son is similar, he is still digesting his food okay(4 1/2 pounds thats very good) but he may need to start them in the future. i would just keep an eye on him if he is getting belly aches consistantly and he doesn't gain weight, speak to your dr's again.
As for getting the other children tested i think that you are right to go for the genetic testing. just make sure they check not just 98 types they do them all.
I remember the time of diagnosis. i remember thinking that blake would have to spend his whole life in hospital and that he would be constantly sick, and now i think back and laugh at myself. He has his issues but he is a great active normal kid. you sound like you are getting more confident with Cf and that is great. Asking questions and educating yourself will help you and your son. i think that is the one thing i have learnt if i am not sure of something going on with blake i will keep asking until i understand and i am satisfied that he is getting what he needs.
With your boyfriend i would just try and encourage him to do one of his treatments each day. people handle things differently and although it sucks that you feel like you are doing it all at the moment with some encouragement he might come around and help some more.
i hoped i helped
cheers leigh

leigh12 · Jul 17, 2008

hi jennifer, i just caught up on this thread. blake was pancreatic sufficent for the first two years of his life. He never lost weight suddenly or had any problems but his dietician would just check his stools every 6 months or so. then just after his 2nd birthday she told us that he was boarderline. So at two he started enzymes and has continued on without a problem since he is still at the 75th percentile for both weight and height. it sounds like your son is similar, he is still digesting his food okay(4 1/2 pounds thats very good) but he may need to start them in the future. i would just keep an eye on him if he is getting belly aches consistantly and he doesn't gain weight, speak to your dr's again.
As for getting the other children tested i think that you are right to go for the genetic testing. just make sure they check not just 98 types they do them all.
I remember the time of diagnosis. i remember thinking that blake would have to spend his whole life in hospital and that he would be constantly sick, and now i think back and laugh at myself. He has his issues but he is a great active normal kid. you sound like you are getting more confident with Cf and that is great. Asking questions and educating yourself will help you and your son. i think that is the one thing i have learnt if i am not sure of something going on with blake i will keep asking until i understand and i am satisfied that he is getting what he needs.
With your boyfriend i would just try and encourage him to do one of his treatments each day. people handle things differently and although it sucks that you feel like you are doing it all at the moment with some encouragement he might come around and help some more.
i hoped i helped
cheers leigh

leigh12 · Jul 17, 2008

hi jennifer, i just caught up on this thread. blake was pancreatic sufficent for the first two years of his life. He never lost weight suddenly or had any problems but his dietician would just check his stools every 6 months or so. then just after his 2nd birthday she told us that he was boarderline. So at two he started enzymes and has continued on without a problem since he is still at the 75th percentile for both weight and height. it sounds like your son is similar, he is still digesting his food okay(4 1/2 pounds thats very good) but he may need to start them in the future. i would just keep an eye on him if he is getting belly aches consistantly and he doesn't gain weight, speak to your dr's again.
As for getting the other children tested i think that you are right to go for the genetic testing. just make sure they check not just 98 types they do them all.
I remember the time of diagnosis. i remember thinking that blake would have to spend his whole life in hospital and that he would be constantly sick, and now i think back and laugh at myself. He has his issues but he is a great active normal kid. you sound like you are getting more confident with Cf and that is great. Asking questions and educating yourself will help you and your son. i think that is the one thing i have learnt if i am not sure of something going on with blake i will keep asking until i understand and i am satisfied that he is getting what he needs.
With your boyfriend i would just try and encourage him to do one of his treatments each day. people handle things differently and although it sucks that you feel like you are doing it all at the moment with some encouragement he might come around and help some more.
i hoped i helped
cheers leigh

leigh12 · Jul 17, 2008

hi jennifer, i just caught up on this thread. blake was pancreatic sufficent for the first two years of his life. He never lost weight suddenly or had any problems but his dietician would just check his stools every 6 months or so. then just after his 2nd birthday she told us that he was boarderline. So at two he started enzymes and has continued on without a problem since he is still at the 75th percentile for both weight and height. it sounds like your son is similar, he is still digesting his food okay(4 1/2 pounds thats very good) but he may need to start them in the future. i would just keep an eye on him if he is getting belly aches consistantly and he doesn't gain weight, speak to your dr's again.
 As for getting the other children tested i think that you are right to go for the genetic testing. just make sure they check not just 98 types they do them all.
 I remember the time of diagnosis. i remember thinking that blake would have to spend his whole life in hospital and that he would be constantly sick, and now i think back and laugh at myself. He has his issues but he is a great active normal kid. you sound like you are getting more confident with Cf and that is great. Asking questions and educating yourself will help you and your son. i think that is the one thing i have learnt if i am not sure of something going on with blake i will keep asking until i understand and i am satisfied that he is getting what he needs.
 With your boyfriend i would just try and encourage him to do one of his treatments each day. people handle things differently and although it sucks that you feel like you are doing it all at the moment with some encouragement he might come around and help some more.
 i hoped i helped
 cheers leigh

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