Baby diagnosed this week...trying to cope

R

Ratatosk

Administrator
Staff member
DS had a normal (32) sweat test and a couple inconclusive blood tests (not a large enough sample). We did get a positive blood test identifying the mutations, but the issues with the other tests, only served to confuse us -- parents who were in denial and grasping at straws thinking it was all just a mistake.

DS is a very social kid. After my 12 weeks maternity leave, he went to a daycare center. The daycare director was great about sterilization procedures, informing us about any illnesses going around. The only issues they had to deal with that were different from the other kids were giving him enzymes before meals and mixing up his formula stronger than regular formula and I provided a recipe for them from the dietician. Otherwise cpt and meds were all arranged to be done at home. Oh and in the summer they make sure they carry along a salt shaker so he gets adequate salt.

Both DH and I had adequate leave time and flexible schedules to arrange for doctor appointments. Though this past summer we were both able to stay with him during an almost 3 week hospitalization -- if he would have had to stay longer on IV abx -- we were going to have to arrange to take turns and DH was arranging to have files sent to him so he could work on projects from the hospital.
 
R

Ratatosk

Administrator
Staff member
DS had a normal (32) sweat test and a couple inconclusive blood tests (not a large enough sample). We did get a positive blood test identifying the mutations, but the issues with the other tests, only served to confuse us -- parents who were in denial and grasping at straws thinking it was all just a mistake.

DS is a very social kid. After my 12 weeks maternity leave, he went to a daycare center. The daycare director was great about sterilization procedures, informing us about any illnesses going around. The only issues they had to deal with that were different from the other kids were giving him enzymes before meals and mixing up his formula stronger than regular formula and I provided a recipe for them from the dietician. Otherwise cpt and meds were all arranged to be done at home. Oh and in the summer they make sure they carry along a salt shaker so he gets adequate salt.

Both DH and I had adequate leave time and flexible schedules to arrange for doctor appointments. Though this past summer we were both able to stay with him during an almost 3 week hospitalization -- if he would have had to stay longer on IV abx -- we were going to have to arrange to take turns and DH was arranging to have files sent to him so he could work on projects from the hospital.
 
R

Ratatosk

Administrator
Staff member
DS had a normal (32) sweat test and a couple inconclusive blood tests (not a large enough sample). We did get a positive blood test identifying the mutations, but the issues with the other tests, only served to confuse us -- parents who were in denial and grasping at straws thinking it was all just a mistake.

DS is a very social kid. After my 12 weeks maternity leave, he went to a daycare center. The daycare director was great about sterilization procedures, informing us about any illnesses going around. The only issues they had to deal with that were different from the other kids were giving him enzymes before meals and mixing up his formula stronger than regular formula and I provided a recipe for them from the dietician. Otherwise cpt and meds were all arranged to be done at home. Oh and in the summer they make sure they carry along a salt shaker so he gets adequate salt.

Both DH and I had adequate leave time and flexible schedules to arrange for doctor appointments. Though this past summer we were both able to stay with him during an almost 3 week hospitalization -- if he would have had to stay longer on IV abx -- we were going to have to arrange to take turns and DH was arranging to have files sent to him so he could work on projects from the hospital.
 
R

Ratatosk

Administrator
Staff member
DS had a normal (32) sweat test and a couple inconclusive blood tests (not a large enough sample). We did get a positive blood test identifying the mutations, but the issues with the other tests, only served to confuse us -- parents who were in denial and grasping at straws thinking it was all just a mistake.

DS is a very social kid. After my 12 weeks maternity leave, he went to a daycare center. The daycare director was great about sterilization procedures, informing us about any illnesses going around. The only issues they had to deal with that were different from the other kids were giving him enzymes before meals and mixing up his formula stronger than regular formula and I provided a recipe for them from the dietician. Otherwise cpt and meds were all arranged to be done at home. Oh and in the summer they make sure they carry along a salt shaker so he gets adequate salt.

Both DH and I had adequate leave time and flexible schedules to arrange for doctor appointments. Though this past summer we were both able to stay with him during an almost 3 week hospitalization -- if he would have had to stay longer on IV abx -- we were going to have to arrange to take turns and DH was arranging to have files sent to him so he could work on projects from the hospital.
 
R

Ratatosk

Administrator
Staff member
DS had a normal (32) sweat test and a couple inconclusive blood tests (not a large enough sample). We did get a positive blood test identifying the mutations, but the issues with the other tests, only served to confuse us -- parents who were in denial and grasping at straws thinking it was all just a mistake.
<br />
<br />DS is a very social kid. After my 12 weeks maternity leave, he went to a daycare center. The daycare director was great about sterilization procedures, informing us about any illnesses going around. The only issues they had to deal with that were different from the other kids were giving him enzymes before meals and mixing up his formula stronger than regular formula and I provided a recipe for them from the dietician. Otherwise cpt and meds were all arranged to be done at home. Oh and in the summer they make sure they carry along a salt shaker so he gets adequate salt.
<br />
<br />Both DH and I had adequate leave time and flexible schedules to arrange for doctor appointments. Though this past summer we were both able to stay with him during an almost 3 week hospitalization -- if he would have had to stay longer on IV abx -- we were going to have to arrange to take turns and DH was arranging to have files sent to him so he could work on projects from the hospital.
 
K

kcw082407

New member
Hi! Sorry to hear about your twins, but, as everyone else has been saying, it does get easier. My daughter was diagnosed @ 6weeks. We had no idea we were carriers, and there's no family hx of CF. My daughter would just cry for hours after eating, had poor weight gain, weird BMs.
She is now a chubby, healthy ball of energy. We do have asymptomatic chronic pseudomonas (nonmucoid) since age 14months, and we do inhaled TOBI every other month.

Yes, there is devastation. It takes time to get used to the idea that CF is now a part of your lives. I am a nurse practitioner. I did switch to part time, and thankfully, my mom watches KC when I'm at work. I wanted to limit her time in daycare to help decrease her exposure to infections.
(Thats not to say she doesn't get socialization...she gets lots of playtime with others). Actually, after 2 years, I am sooo glad I've been able to have the time off with her...CF or not.

Chest PT, enzymes, handwashing, and all the other stuff just somehow works into your schedule.

Coping.... cry, talk, get mad, love on your babies, anything that gets you through. Even now, I still have good days and bad days. The bad days I get bummed out, cry and my heart breaks, but then I look at KC and I see how strong she is. Then, I kick myself in the butt and vow to help keep her as healthy and happy as I can.

Seek out other CF parents, too. They are a wealth of knowledge and experience, and do know exactly how you feel.

Good luck with you little guys!
 
K

kcw082407

New member
Hi! Sorry to hear about your twins, but, as everyone else has been saying, it does get easier. My daughter was diagnosed @ 6weeks. We had no idea we were carriers, and there's no family hx of CF. My daughter would just cry for hours after eating, had poor weight gain, weird BMs.
She is now a chubby, healthy ball of energy. We do have asymptomatic chronic pseudomonas (nonmucoid) since age 14months, and we do inhaled TOBI every other month.

Yes, there is devastation. It takes time to get used to the idea that CF is now a part of your lives. I am a nurse practitioner. I did switch to part time, and thankfully, my mom watches KC when I'm at work. I wanted to limit her time in daycare to help decrease her exposure to infections.
(Thats not to say she doesn't get socialization...she gets lots of playtime with others). Actually, after 2 years, I am sooo glad I've been able to have the time off with her...CF or not.

Chest PT, enzymes, handwashing, and all the other stuff just somehow works into your schedule.

Coping.... cry, talk, get mad, love on your babies, anything that gets you through. Even now, I still have good days and bad days. The bad days I get bummed out, cry and my heart breaks, but then I look at KC and I see how strong she is. Then, I kick myself in the butt and vow to help keep her as healthy and happy as I can.

Seek out other CF parents, too. They are a wealth of knowledge and experience, and do know exactly how you feel.

Good luck with you little guys!
 
K

kcw082407

New member
Hi! Sorry to hear about your twins, but, as everyone else has been saying, it does get easier. My daughter was diagnosed @ 6weeks. We had no idea we were carriers, and there's no family hx of CF. My daughter would just cry for hours after eating, had poor weight gain, weird BMs.
She is now a chubby, healthy ball of energy. We do have asymptomatic chronic pseudomonas (nonmucoid) since age 14months, and we do inhaled TOBI every other month.

Yes, there is devastation. It takes time to get used to the idea that CF is now a part of your lives. I am a nurse practitioner. I did switch to part time, and thankfully, my mom watches KC when I'm at work. I wanted to limit her time in daycare to help decrease her exposure to infections.
(Thats not to say she doesn't get socialization...she gets lots of playtime with others). Actually, after 2 years, I am sooo glad I've been able to have the time off with her...CF or not.

Chest PT, enzymes, handwashing, and all the other stuff just somehow works into your schedule.

Coping.... cry, talk, get mad, love on your babies, anything that gets you through. Even now, I still have good days and bad days. The bad days I get bummed out, cry and my heart breaks, but then I look at KC and I see how strong she is. Then, I kick myself in the butt and vow to help keep her as healthy and happy as I can.

Seek out other CF parents, too. They are a wealth of knowledge and experience, and do know exactly how you feel.

Good luck with you little guys!
 
K

kcw082407

New member
Hi! Sorry to hear about your twins, but, as everyone else has been saying, it does get easier. My daughter was diagnosed @ 6weeks. We had no idea we were carriers, and there's no family hx of CF. My daughter would just cry for hours after eating, had poor weight gain, weird BMs.
She is now a chubby, healthy ball of energy. We do have asymptomatic chronic pseudomonas (nonmucoid) since age 14months, and we do inhaled TOBI every other month.

Yes, there is devastation. It takes time to get used to the idea that CF is now a part of your lives. I am a nurse practitioner. I did switch to part time, and thankfully, my mom watches KC when I'm at work. I wanted to limit her time in daycare to help decrease her exposure to infections.
(Thats not to say she doesn't get socialization...she gets lots of playtime with others). Actually, after 2 years, I am sooo glad I've been able to have the time off with her...CF or not.

Chest PT, enzymes, handwashing, and all the other stuff just somehow works into your schedule.

Coping.... cry, talk, get mad, love on your babies, anything that gets you through. Even now, I still have good days and bad days. The bad days I get bummed out, cry and my heart breaks, but then I look at KC and I see how strong she is. Then, I kick myself in the butt and vow to help keep her as healthy and happy as I can.

Seek out other CF parents, too. They are a wealth of knowledge and experience, and do know exactly how you feel.

Good luck with you little guys!
 
K

kcw082407

New member
Hi! Sorry to hear about your twins, but, as everyone else has been saying, it does get easier. My daughter was diagnosed @ 6weeks. We had no idea we were carriers, and there's no family hx of CF. My daughter would just cry for hours after eating, had poor weight gain, weird BMs.
<br />She is now a chubby, healthy ball of energy. We do have asymptomatic chronic pseudomonas (nonmucoid) since age 14months, and we do inhaled TOBI every other month.
<br />
<br />Yes, there is devastation. It takes time to get used to the idea that CF is now a part of your lives. I am a nurse practitioner. I did switch to part time, and thankfully, my mom watches KC when I'm at work. I wanted to limit her time in daycare to help decrease her exposure to infections.
<br />(Thats not to say she doesn't get socialization...she gets lots of playtime with others). Actually, after 2 years, I am sooo glad I've been able to have the time off with her...CF or not.
<br />
<br />Chest PT, enzymes, handwashing, and all the other stuff just somehow works into your schedule.
<br />
<br />Coping.... cry, talk, get mad, love on your babies, anything that gets you through. Even now, I still have good days and bad days. The bad days I get bummed out, cry and my heart breaks, but then I look at KC and I see how strong she is. Then, I kick myself in the butt and vow to help keep her as healthy and happy as I can.
<br />
<br />Seek out other CF parents, too. They are a wealth of knowledge and experience, and do know exactly how you feel.
<br />
<br />Good luck with you little guys!
 
K

kaylee04cassidy08

Guest
Please read my post titled "A Short Walk on the Road Less Traveled". That is the best way I can decsribe how I felt at the time of diagnosis and how I feel now. Please know that as time goes on, it does get easier.
 
K

kaylee04cassidy08

Guest
Please read my post titled "A Short Walk on the Road Less Traveled". That is the best way I can decsribe how I felt at the time of diagnosis and how I feel now. Please know that as time goes on, it does get easier.
 
K

kaylee04cassidy08

Guest
Please read my post titled "A Short Walk on the Road Less Traveled". That is the best way I can decsribe how I felt at the time of diagnosis and how I feel now. Please know that as time goes on, it does get easier.
 
K

kaylee04cassidy08

Guest
Please read my post titled "A Short Walk on the Road Less Traveled". That is the best way I can decsribe how I felt at the time of diagnosis and how I feel now. Please know that as time goes on, it does get easier.
 
K

kaylee04cassidy08

Guest
Please read my post titled "A Short Walk on the Road Less Traveled". That is the best way I can decsribe how I felt at the time of diagnosis and how I feel now. Please know that as time goes on, it does get easier.
 
H

hmw

New member
As others have posted... even with genetic testing, sometimes both mutations are not identified. This occurs even with the comprehensive testing, unfortunately, at times. So it's very possible to have CF, even if only one mutation is known.

So, symptoms and response to treatment are valuable tools in the diagnostic process as well. Sometimes sweat tests are less reliable in a very young baby and will give more accurate results once the baby is older. It's also very important that the sweat test be done at a lab accredited by the CF Foundation- where you have the best odds of it being performed and read correctly. Your son's constellation of symptoms sound very consistent with CF and it's quite appropriate that treatment has begun.

My daughter also has a solid CF diagnosis with the same genetic results as your son: one df508 mutation. Her cousin also has CF with the same issues; one known (I don't know what it is), one unknown mutation. Odds are they share the same unknown mutation (their dads are brothers.) Emily had a very high sweat test (108) and growth failure leading to her dx; her pulmonary involvement is less severe than that of many children w/ CF and so far she only cultures staph, but she is gradually becoming a bit more symptomatic each year.

It's been almost a year since her dx (Emily's dx came very late, at age 7) and it was very overwhelming at first but it has become a lot easier. The CPT (vest and inhaler/nebs) has become routine, and what used to feel like chasing her around all day long with a med bottle is something we do without even thinking- she remembers the enzymes when we don't. She's healthier now than she was before dx, and that makes a huge difference.

It's still hard- I would be lying if I said otherwise- there are times it catches me off guard and is very discouraging. But the overwhelming 'newness' of it all does fade over time and it becomes so much more manageable, and that DOES help a lot.

I hope you get answers soon re. your other son. Are they fraternal twins? I hope all is well with him and he does not have it. And I hope that with his treatments, your son w/ CF is thriving. So much can be done for them now that wasn't possible in past years.

This site has been of much help and encouragement to me in the months since Emily's dx. I am sure you will find the same. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
H

hmw

New member
As others have posted... even with genetic testing, sometimes both mutations are not identified. This occurs even with the comprehensive testing, unfortunately, at times. So it's very possible to have CF, even if only one mutation is known.

So, symptoms and response to treatment are valuable tools in the diagnostic process as well. Sometimes sweat tests are less reliable in a very young baby and will give more accurate results once the baby is older. It's also very important that the sweat test be done at a lab accredited by the CF Foundation- where you have the best odds of it being performed and read correctly. Your son's constellation of symptoms sound very consistent with CF and it's quite appropriate that treatment has begun.

My daughter also has a solid CF diagnosis with the same genetic results as your son: one df508 mutation. Her cousin also has CF with the same issues; one known (I don't know what it is), one unknown mutation. Odds are they share the same unknown mutation (their dads are brothers.) Emily had a very high sweat test (108) and growth failure leading to her dx; her pulmonary involvement is less severe than that of many children w/ CF and so far she only cultures staph, but she is gradually becoming a bit more symptomatic each year.

It's been almost a year since her dx (Emily's dx came very late, at age 7) and it was very overwhelming at first but it has become a lot easier. The CPT (vest and inhaler/nebs) has become routine, and what used to feel like chasing her around all day long with a med bottle is something we do without even thinking- she remembers the enzymes when we don't. She's healthier now than she was before dx, and that makes a huge difference.

It's still hard- I would be lying if I said otherwise- there are times it catches me off guard and is very discouraging. But the overwhelming 'newness' of it all does fade over time and it becomes so much more manageable, and that DOES help a lot.

I hope you get answers soon re. your other son. Are they fraternal twins? I hope all is well with him and he does not have it. And I hope that with his treatments, your son w/ CF is thriving. So much can be done for them now that wasn't possible in past years.

This site has been of much help and encouragement to me in the months since Emily's dx. I am sure you will find the same. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
H

hmw

New member
As others have posted... even with genetic testing, sometimes both mutations are not identified. This occurs even with the comprehensive testing, unfortunately, at times. So it's very possible to have CF, even if only one mutation is known.

So, symptoms and response to treatment are valuable tools in the diagnostic process as well. Sometimes sweat tests are less reliable in a very young baby and will give more accurate results once the baby is older. It's also very important that the sweat test be done at a lab accredited by the CF Foundation- where you have the best odds of it being performed and read correctly. Your son's constellation of symptoms sound very consistent with CF and it's quite appropriate that treatment has begun.

My daughter also has a solid CF diagnosis with the same genetic results as your son: one df508 mutation. Her cousin also has CF with the same issues; one known (I don't know what it is), one unknown mutation. Odds are they share the same unknown mutation (their dads are brothers.) Emily had a very high sweat test (108) and growth failure leading to her dx; her pulmonary involvement is less severe than that of many children w/ CF and so far she only cultures staph, but she is gradually becoming a bit more symptomatic each year.

It's been almost a year since her dx (Emily's dx came very late, at age 7) and it was very overwhelming at first but it has become a lot easier. The CPT (vest and inhaler/nebs) has become routine, and what used to feel like chasing her around all day long with a med bottle is something we do without even thinking- she remembers the enzymes when we don't. She's healthier now than she was before dx, and that makes a huge difference.

It's still hard- I would be lying if I said otherwise- there are times it catches me off guard and is very discouraging. But the overwhelming 'newness' of it all does fade over time and it becomes so much more manageable, and that DOES help a lot.

I hope you get answers soon re. your other son. Are they fraternal twins? I hope all is well with him and he does not have it. And I hope that with his treatments, your son w/ CF is thriving. So much can be done for them now that wasn't possible in past years.

This site has been of much help and encouragement to me in the months since Emily's dx. I am sure you will find the same. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
H

hmw

New member
As others have posted... even with genetic testing, sometimes both mutations are not identified. This occurs even with the comprehensive testing, unfortunately, at times. So it's very possible to have CF, even if only one mutation is known.

So, symptoms and response to treatment are valuable tools in the diagnostic process as well. Sometimes sweat tests are less reliable in a very young baby and will give more accurate results once the baby is older. It's also very important that the sweat test be done at a lab accredited by the CF Foundation- where you have the best odds of it being performed and read correctly. Your son's constellation of symptoms sound very consistent with CF and it's quite appropriate that treatment has begun.

My daughter also has a solid CF diagnosis with the same genetic results as your son: one df508 mutation. Her cousin also has CF with the same issues; one known (I don't know what it is), one unknown mutation. Odds are they share the same unknown mutation (their dads are brothers.) Emily had a very high sweat test (108) and growth failure leading to her dx; her pulmonary involvement is less severe than that of many children w/ CF and so far she only cultures staph, but she is gradually becoming a bit more symptomatic each year.

It's been almost a year since her dx (Emily's dx came very late, at age 7) and it was very overwhelming at first but it has become a lot easier. The CPT (vest and inhaler/nebs) has become routine, and what used to feel like chasing her around all day long with a med bottle is something we do without even thinking- she remembers the enzymes when we don't. She's healthier now than she was before dx, and that makes a huge difference.

It's still hard- I would be lying if I said otherwise- there are times it catches me off guard and is very discouraging. But the overwhelming 'newness' of it all does fade over time and it becomes so much more manageable, and that DOES help a lot.

I hope you get answers soon re. your other son. Are they fraternal twins? I hope all is well with him and he does not have it. And I hope that with his treatments, your son w/ CF is thriving. So much can be done for them now that wasn't possible in past years.

This site has been of much help and encouragement to me in the months since Emily's dx. I am sure you will find the same. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
H

hmw

New member
As others have posted... even with genetic testing, sometimes both mutations are not identified. This occurs even with the comprehensive testing, unfortunately, at times. So it's very possible to have CF, even if only one mutation is known.
<br />
<br />So, symptoms and response to treatment are valuable tools in the diagnostic process as well. Sometimes sweat tests are less reliable in a very young baby and will give more accurate results once the baby is older. It's also very important that the sweat test be done at a lab accredited by the CF Foundation- where you have the best odds of it being performed and read correctly. Your son's constellation of symptoms sound very consistent with CF and it's quite appropriate that treatment has begun.
<br />
<br />My daughter also has a solid CF diagnosis with the same genetic results as your son: one df508 mutation. Her cousin also has CF with the same issues; one known (I don't know what it is), one unknown mutation. Odds are they share the same unknown mutation (their dads are brothers.) Emily had a very high sweat test (108) and growth failure leading to her dx; her pulmonary involvement is less severe than that of many children w/ CF and so far she only cultures staph, but she is gradually becoming a bit more symptomatic each year.
<br />
<br />It's been almost a year since her dx (Emily's dx came very late, at age 7) and it was very overwhelming at first but it has become a lot easier. The CPT (vest and inhaler/nebs) has become routine, and what used to feel like chasing her around all day long with a med bottle is something we do without even thinking- she remembers the enzymes when we don't. She's healthier now than she was before dx, and that makes a huge difference.
<br />
<br />It's still hard- I would be lying if I said otherwise- there are times it catches me off guard and is very discouraging. But the overwhelming 'newness' of it all does fade over time and it becomes so much more manageable, and that DOES help a lot.
<br />
<br />I hope you get answers soon re. your other son. Are they fraternal twins? I hope all is well with him and he does not have it. And I hope that with his treatments, your son w/ CF is thriving. So much can be done for them now that wasn't possible in past years.
<br />
<br />This site has been of much help and encouragement to me in the months since Emily's dx. I am sure you will find the same. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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