Does this Sound Like CF?

kteesmumma

New member
My daughter will be 7 in April. She had a normaly typical birth. No complications.

As an infant and toddler she had constipation and diarrhea issues. She still has severe constipation issues. At 4 years old she was diagnosed with Sensory Processing Disorder and we were told that the constipation was due to the fact that she couldnt feel that she had to go. Well we got over that hump and we are still dealing with the Constipation issues. She doesnt go for days...and sometimes when she tries to go, her stool is so large and hard that she cant pass it..it comes out half way..but it wont completely come out. I have also notices a small fleshy thing that tends to stick out of her bum while shes trying to push, but goes back in when shes done pushing.

A year ago she was diagnosed with Asthma. It came out of nowhere...as an infant and toddler she had maybe 2 respiratory infections. Nothing serious.

A year ago she started off with what we thought was exercise induced asthma. She was even able to calm herself and come out of attacks with no medical help or medicine. Her Ped sent us to a Pulmo, but at that point she was sounding great..and the pulmo wasnt sure what was going on. Then the attacks got a bit harder to come out of..and she was put on albuterol inhaler and neb treatments when she would start to wheeze. Come last April was her first trip to the ER. She was admitted overnight and was given Albuterol treatments. Her Oxygen Saturation dropped to 86. Her Ped started her on twice a day pulmicort repsules...for 2 weeks. She did great over the summer..only needed her inhaler a few times..but we were able to control it. Come Fall, she was getting sick alot more...needing more Pulmicort, more trips to the Drs. She ended up with Pneumonia in Novemeber. We were able to treat it at home with no problems. Come this Jan, she was hospitalized again for a day for Pneumonia. Two weeks later, after being on and her steriods...she got sick again. Took her back to the drs and he did another xray and the pnuemonia hadnt cleared up yet...so she was put on more antibiotics and back on the pulmicort. 2 weeks ago we went back to the Ped to follow up with another xray..and everything was clear..she sounded great..and we were doing just another 2 weeks of pulmicort and we were gonna come off....well 5 days later..we were calling 911 in the middle of the night. She was at her worst, we have ever seen her. Her O2 Sat was 77. They transported her to the Hospital. She was on Oxygen for 3 days.....they took another xray..and the pneumonia was back. They also said that she had atelectasis. Which they believe she may have had all the other times as well. She was put on antibiotics again, prednesone again and back on the pulmicort. We went 2 days ago to follow up with her Ped and her O2 sat was 99 and she sounded good. He put her on singulair chewables, staying on the twice a day pulmicort and doing daily dose of Miralax. We see the Pulmo again in 2 weeks...

Her Ped actually brought up CF, at the appt prior to her last trip to the hospital..and he brought it up again this past Monday...and he seemed more concerned this time.

With all of this..does it sound like something a Pulmo would test for?

Does this at all sound familiar to anyone? Does my daughter sound like a CF kid?

I mean we are at the point right now where if she gets a slight sniffle (which is what she had before her last trip to the hospital, hubby and I had head colds, nothing too major, she started sneezing and congested for a day and then BAM..she was barely breathing) we get paranoid. We dont allow anyone near her that is at all slightly sick.
 

kteesmumma

New member
My daughter will be 7 in April. She had a normaly typical birth. No complications.

As an infant and toddler she had constipation and diarrhea issues. She still has severe constipation issues. At 4 years old she was diagnosed with Sensory Processing Disorder and we were told that the constipation was due to the fact that she couldnt feel that she had to go. Well we got over that hump and we are still dealing with the Constipation issues. She doesnt go for days...and sometimes when she tries to go, her stool is so large and hard that she cant pass it..it comes out half way..but it wont completely come out. I have also notices a small fleshy thing that tends to stick out of her bum while shes trying to push, but goes back in when shes done pushing.

A year ago she was diagnosed with Asthma. It came out of nowhere...as an infant and toddler she had maybe 2 respiratory infections. Nothing serious.

A year ago she started off with what we thought was exercise induced asthma. She was even able to calm herself and come out of attacks with no medical help or medicine. Her Ped sent us to a Pulmo, but at that point she was sounding great..and the pulmo wasnt sure what was going on. Then the attacks got a bit harder to come out of..and she was put on albuterol inhaler and neb treatments when she would start to wheeze. Come last April was her first trip to the ER. She was admitted overnight and was given Albuterol treatments. Her Oxygen Saturation dropped to 86. Her Ped started her on twice a day pulmicort repsules...for 2 weeks. She did great over the summer..only needed her inhaler a few times..but we were able to control it. Come Fall, she was getting sick alot more...needing more Pulmicort, more trips to the Drs. She ended up with Pneumonia in Novemeber. We were able to treat it at home with no problems. Come this Jan, she was hospitalized again for a day for Pneumonia. Two weeks later, after being on and her steriods...she got sick again. Took her back to the drs and he did another xray and the pnuemonia hadnt cleared up yet...so she was put on more antibiotics and back on the pulmicort. 2 weeks ago we went back to the Ped to follow up with another xray..and everything was clear..she sounded great..and we were doing just another 2 weeks of pulmicort and we were gonna come off....well 5 days later..we were calling 911 in the middle of the night. She was at her worst, we have ever seen her. Her O2 Sat was 77. They transported her to the Hospital. She was on Oxygen for 3 days.....they took another xray..and the pneumonia was back. They also said that she had atelectasis. Which they believe she may have had all the other times as well. She was put on antibiotics again, prednesone again and back on the pulmicort. We went 2 days ago to follow up with her Ped and her O2 sat was 99 and she sounded good. He put her on singulair chewables, staying on the twice a day pulmicort and doing daily dose of Miralax. We see the Pulmo again in 2 weeks...

Her Ped actually brought up CF, at the appt prior to her last trip to the hospital..and he brought it up again this past Monday...and he seemed more concerned this time.

With all of this..does it sound like something a Pulmo would test for?

Does this at all sound familiar to anyone? Does my daughter sound like a CF kid?

I mean we are at the point right now where if she gets a slight sniffle (which is what she had before her last trip to the hospital, hubby and I had head colds, nothing too major, she started sneezing and congested for a day and then BAM..she was barely breathing) we get paranoid. We dont allow anyone near her that is at all slightly sick.
 

kteesmumma

New member
My daughter will be 7 in April. She had a normaly typical birth. No complications.

As an infant and toddler she had constipation and diarrhea issues. She still has severe constipation issues. At 4 years old she was diagnosed with Sensory Processing Disorder and we were told that the constipation was due to the fact that she couldnt feel that she had to go. Well we got over that hump and we are still dealing with the Constipation issues. She doesnt go for days...and sometimes when she tries to go, her stool is so large and hard that she cant pass it..it comes out half way..but it wont completely come out. I have also notices a small fleshy thing that tends to stick out of her bum while shes trying to push, but goes back in when shes done pushing.

A year ago she was diagnosed with Asthma. It came out of nowhere...as an infant and toddler she had maybe 2 respiratory infections. Nothing serious.

A year ago she started off with what we thought was exercise induced asthma. She was even able to calm herself and come out of attacks with no medical help or medicine. Her Ped sent us to a Pulmo, but at that point she was sounding great..and the pulmo wasnt sure what was going on. Then the attacks got a bit harder to come out of..and she was put on albuterol inhaler and neb treatments when she would start to wheeze. Come last April was her first trip to the ER. She was admitted overnight and was given Albuterol treatments. Her Oxygen Saturation dropped to 86. Her Ped started her on twice a day pulmicort repsules...for 2 weeks. She did great over the summer..only needed her inhaler a few times..but we were able to control it. Come Fall, she was getting sick alot more...needing more Pulmicort, more trips to the Drs. She ended up with Pneumonia in Novemeber. We were able to treat it at home with no problems. Come this Jan, she was hospitalized again for a day for Pneumonia. Two weeks later, after being on and her steriods...she got sick again. Took her back to the drs and he did another xray and the pnuemonia hadnt cleared up yet...so she was put on more antibiotics and back on the pulmicort. 2 weeks ago we went back to the Ped to follow up with another xray..and everything was clear..she sounded great..and we were doing just another 2 weeks of pulmicort and we were gonna come off....well 5 days later..we were calling 911 in the middle of the night. She was at her worst, we have ever seen her. Her O2 Sat was 77. They transported her to the Hospital. She was on Oxygen for 3 days.....they took another xray..and the pneumonia was back. They also said that she had atelectasis. Which they believe she may have had all the other times as well. She was put on antibiotics again, prednesone again and back on the pulmicort. We went 2 days ago to follow up with her Ped and her O2 sat was 99 and she sounded good. He put her on singulair chewables, staying on the twice a day pulmicort and doing daily dose of Miralax. We see the Pulmo again in 2 weeks...

Her Ped actually brought up CF, at the appt prior to her last trip to the hospital..and he brought it up again this past Monday...and he seemed more concerned this time.

With all of this..does it sound like something a Pulmo would test for?

Does this at all sound familiar to anyone? Does my daughter sound like a CF kid?

I mean we are at the point right now where if she gets a slight sniffle (which is what she had before her last trip to the hospital, hubby and I had head colds, nothing too major, she started sneezing and congested for a day and then BAM..she was barely breathing) we get paranoid. We dont allow anyone near her that is at all slightly sick.
 

kteesmumma

New member
My daughter will be 7 in April. She had a normaly typical birth. No complications.

As an infant and toddler she had constipation and diarrhea issues. She still has severe constipation issues. At 4 years old she was diagnosed with Sensory Processing Disorder and we were told that the constipation was due to the fact that she couldnt feel that she had to go. Well we got over that hump and we are still dealing with the Constipation issues. She doesnt go for days...and sometimes when she tries to go, her stool is so large and hard that she cant pass it..it comes out half way..but it wont completely come out. I have also notices a small fleshy thing that tends to stick out of her bum while shes trying to push, but goes back in when shes done pushing.

A year ago she was diagnosed with Asthma. It came out of nowhere...as an infant and toddler she had maybe 2 respiratory infections. Nothing serious.

A year ago she started off with what we thought was exercise induced asthma. She was even able to calm herself and come out of attacks with no medical help or medicine. Her Ped sent us to a Pulmo, but at that point she was sounding great..and the pulmo wasnt sure what was going on. Then the attacks got a bit harder to come out of..and she was put on albuterol inhaler and neb treatments when she would start to wheeze. Come last April was her first trip to the ER. She was admitted overnight and was given Albuterol treatments. Her Oxygen Saturation dropped to 86. Her Ped started her on twice a day pulmicort repsules...for 2 weeks. She did great over the summer..only needed her inhaler a few times..but we were able to control it. Come Fall, she was getting sick alot more...needing more Pulmicort, more trips to the Drs. She ended up with Pneumonia in Novemeber. We were able to treat it at home with no problems. Come this Jan, she was hospitalized again for a day for Pneumonia. Two weeks later, after being on and her steriods...she got sick again. Took her back to the drs and he did another xray and the pnuemonia hadnt cleared up yet...so she was put on more antibiotics and back on the pulmicort. 2 weeks ago we went back to the Ped to follow up with another xray..and everything was clear..she sounded great..and we were doing just another 2 weeks of pulmicort and we were gonna come off....well 5 days later..we were calling 911 in the middle of the night. She was at her worst, we have ever seen her. Her O2 Sat was 77. They transported her to the Hospital. She was on Oxygen for 3 days.....they took another xray..and the pneumonia was back. They also said that she had atelectasis. Which they believe she may have had all the other times as well. She was put on antibiotics again, prednesone again and back on the pulmicort. We went 2 days ago to follow up with her Ped and her O2 sat was 99 and she sounded good. He put her on singulair chewables, staying on the twice a day pulmicort and doing daily dose of Miralax. We see the Pulmo again in 2 weeks...

Her Ped actually brought up CF, at the appt prior to her last trip to the hospital..and he brought it up again this past Monday...and he seemed more concerned this time.

With all of this..does it sound like something a Pulmo would test for?

Does this at all sound familiar to anyone? Does my daughter sound like a CF kid?

I mean we are at the point right now where if she gets a slight sniffle (which is what she had before her last trip to the hospital, hubby and I had head colds, nothing too major, she started sneezing and congested for a day and then BAM..she was barely breathing) we get paranoid. We dont allow anyone near her that is at all slightly sick.
 

kteesmumma

New member
My daughter will be 7 in April. She had a normaly typical birth. No complications.
<br />
<br />As an infant and toddler she had constipation and diarrhea issues. She still has severe constipation issues. At 4 years old she was diagnosed with Sensory Processing Disorder and we were told that the constipation was due to the fact that she couldnt feel that she had to go. Well we got over that hump and we are still dealing with the Constipation issues. She doesnt go for days...and sometimes when she tries to go, her stool is so large and hard that she cant pass it..it comes out half way..but it wont completely come out. I have also notices a small fleshy thing that tends to stick out of her bum while shes trying to push, but goes back in when shes done pushing.
<br />
<br />A year ago she was diagnosed with Asthma. It came out of nowhere...as an infant and toddler she had maybe 2 respiratory infections. Nothing serious.
<br />
<br />A year ago she started off with what we thought was exercise induced asthma. She was even able to calm herself and come out of attacks with no medical help or medicine. Her Ped sent us to a Pulmo, but at that point she was sounding great..and the pulmo wasnt sure what was going on. Then the attacks got a bit harder to come out of..and she was put on albuterol inhaler and neb treatments when she would start to wheeze. Come last April was her first trip to the ER. She was admitted overnight and was given Albuterol treatments. Her Oxygen Saturation dropped to 86. Her Ped started her on twice a day pulmicort repsules...for 2 weeks. She did great over the summer..only needed her inhaler a few times..but we were able to control it. Come Fall, she was getting sick alot more...needing more Pulmicort, more trips to the Drs. She ended up with Pneumonia in Novemeber. We were able to treat it at home with no problems. Come this Jan, she was hospitalized again for a day for Pneumonia. Two weeks later, after being on and her steriods...she got sick again. Took her back to the drs and he did another xray and the pnuemonia hadnt cleared up yet...so she was put on more antibiotics and back on the pulmicort. 2 weeks ago we went back to the Ped to follow up with another xray..and everything was clear..she sounded great..and we were doing just another 2 weeks of pulmicort and we were gonna come off....well 5 days later..we were calling 911 in the middle of the night. She was at her worst, we have ever seen her. Her O2 Sat was 77. They transported her to the Hospital. She was on Oxygen for 3 days.....they took another xray..and the pneumonia was back. They also said that she had atelectasis. Which they believe she may have had all the other times as well. She was put on antibiotics again, prednesone again and back on the pulmicort. We went 2 days ago to follow up with her Ped and her O2 sat was 99 and she sounded good. He put her on singulair chewables, staying on the twice a day pulmicort and doing daily dose of Miralax. We see the Pulmo again in 2 weeks...
<br />
<br />Her Ped actually brought up CF, at the appt prior to her last trip to the hospital..and he brought it up again this past Monday...and he seemed more concerned this time.
<br />
<br />With all of this..does it sound like something a Pulmo would test for?
<br />
<br />Does this at all sound familiar to anyone? Does my daughter sound like a CF kid?
<br />
<br />I mean we are at the point right now where if she gets a slight sniffle (which is what she had before her last trip to the hospital, hubby and I had head colds, nothing too major, she started sneezing and congested for a day and then BAM..she was barely breathing) we get paranoid. We dont allow anyone near her that is at all slightly sick.
<br />
<br />
 

JORDYSMOM

New member
Hi & welcome. I'm sorry your daughter is struggling so much. I imagine it's very scary for all of you.

I think that if you have a ped. willing to test for CF, you should do it. CF is such a complex disease, and it presents differently in every patient. It is a progressive disease, so that could explain why your daughter has had more problems as she's gotten older.

The one thing I would suggest is that the ped. either give you a referral to a certified CF center, or that he/she order the Ambry Amplified genetic test. A lot of times, insurance companies require sweat tests first, then genetic testing, but it's very important that all testing be done at an accredited facility.

Whatever happens, I hope you find the answers you need to help your little one feel better. Please keep us posted.

Stacey
 

JORDYSMOM

New member
Hi & welcome. I'm sorry your daughter is struggling so much. I imagine it's very scary for all of you.

I think that if you have a ped. willing to test for CF, you should do it. CF is such a complex disease, and it presents differently in every patient. It is a progressive disease, so that could explain why your daughter has had more problems as she's gotten older.

The one thing I would suggest is that the ped. either give you a referral to a certified CF center, or that he/she order the Ambry Amplified genetic test. A lot of times, insurance companies require sweat tests first, then genetic testing, but it's very important that all testing be done at an accredited facility.

Whatever happens, I hope you find the answers you need to help your little one feel better. Please keep us posted.

Stacey
 

JORDYSMOM

New member
Hi & welcome. I'm sorry your daughter is struggling so much. I imagine it's very scary for all of you.

I think that if you have a ped. willing to test for CF, you should do it. CF is such a complex disease, and it presents differently in every patient. It is a progressive disease, so that could explain why your daughter has had more problems as she's gotten older.

The one thing I would suggest is that the ped. either give you a referral to a certified CF center, or that he/she order the Ambry Amplified genetic test. A lot of times, insurance companies require sweat tests first, then genetic testing, but it's very important that all testing be done at an accredited facility.

Whatever happens, I hope you find the answers you need to help your little one feel better. Please keep us posted.

Stacey
 

JORDYSMOM

New member
Hi & welcome. I'm sorry your daughter is struggling so much. I imagine it's very scary for all of you.

I think that if you have a ped. willing to test for CF, you should do it. CF is such a complex disease, and it presents differently in every patient. It is a progressive disease, so that could explain why your daughter has had more problems as she's gotten older.

The one thing I would suggest is that the ped. either give you a referral to a certified CF center, or that he/she order the Ambry Amplified genetic test. A lot of times, insurance companies require sweat tests first, then genetic testing, but it's very important that all testing be done at an accredited facility.

Whatever happens, I hope you find the answers you need to help your little one feel better. Please keep us posted.

Stacey
 

JORDYSMOM

New member
Hi & welcome. I'm sorry your daughter is struggling so much. I imagine it's very scary for all of you.
<br />
<br />I think that if you have a ped. willing to test for CF, you should do it. CF is such a complex disease, and it presents differently in every patient. It is a progressive disease, so that could explain why your daughter has had more problems as she's gotten older.
<br />
<br />The one thing I would suggest is that the ped. either give you a referral to a certified CF center, or that he/she order the Ambry Amplified genetic test. A lot of times, insurance companies require sweat tests first, then genetic testing, but it's very important that all testing be done at an accredited facility.
<br />
<br />Whatever happens, I hope you find the answers you need to help your little one feel better. Please keep us posted.
<br />
<br />Stacey
 

kteesmumma

New member
THank you so much....

We have an appt in 2 weeks to go back and see the Pulmo..

We will be going to Childrens Hospital in Boston..it is a certified CF Center...so I know we will be in good hands. Her Pulmo is actually one of the directors of the CF Center. My problem is having to wait 2 weeks for all of this.
 

kteesmumma

New member
THank you so much....

We have an appt in 2 weeks to go back and see the Pulmo..

We will be going to Childrens Hospital in Boston..it is a certified CF Center...so I know we will be in good hands. Her Pulmo is actually one of the directors of the CF Center. My problem is having to wait 2 weeks for all of this.
 

kteesmumma

New member
THank you so much....

We have an appt in 2 weeks to go back and see the Pulmo..

We will be going to Childrens Hospital in Boston..it is a certified CF Center...so I know we will be in good hands. Her Pulmo is actually one of the directors of the CF Center. My problem is having to wait 2 weeks for all of this.
 

kteesmumma

New member
THank you so much....

We have an appt in 2 weeks to go back and see the Pulmo..

We will be going to Childrens Hospital in Boston..it is a certified CF Center...so I know we will be in good hands. Her Pulmo is actually one of the directors of the CF Center. My problem is having to wait 2 weeks for all of this.
 

kteesmumma

New member
THank you so much....
<br />
<br />We have an appt in 2 weeks to go back and see the Pulmo..
<br />
<br />We will be going to Childrens Hospital in Boston..it is a certified CF Center...so I know we will be in good hands. Her Pulmo is actually one of the directors of the CF Center. My problem is having to wait 2 weeks for all of this.
 
S

sdelorenzo

Guest
There are such degrees of this disease it never hurts to test if there are symptoms. My nephew (with cf) was four when my infant daughter was diagnosed with cf. My nephew's main problem was constipation and no one had thought to test him for cf until my daughter's diagnosis. Hopefully you will get answers soon.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 13 months no cf
 
S

sdelorenzo

Guest
There are such degrees of this disease it never hurts to test if there are symptoms. My nephew (with cf) was four when my infant daughter was diagnosed with cf. My nephew's main problem was constipation and no one had thought to test him for cf until my daughter's diagnosis. Hopefully you will get answers soon.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 13 months no cf
 
S

sdelorenzo

Guest
There are such degrees of this disease it never hurts to test if there are symptoms. My nephew (with cf) was four when my infant daughter was diagnosed with cf. My nephew's main problem was constipation and no one had thought to test him for cf until my daughter's diagnosis. Hopefully you will get answers soon.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 13 months no cf
 
S

sdelorenzo

Guest
There are such degrees of this disease it never hurts to test if there are symptoms. My nephew (with cf) was four when my infant daughter was diagnosed with cf. My nephew's main problem was constipation and no one had thought to test him for cf until my daughter's diagnosis. Hopefully you will get answers soon.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 13 months no cf
 
S

sdelorenzo

Guest
There are such degrees of this disease it never hurts to test if there are symptoms. My nephew (with cf) was four when my infant daughter was diagnosed with cf. My nephew's main problem was constipation and no one had thought to test him for cf until my daughter's diagnosis. Hopefully you will get answers soon.
<br />Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 13 months no cf
 
Top