My granddaughter has CF

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Ellasgma

Guest
My granddaughter Ella was diagnosed with CF when she was 3 days old, we have been doing the enzymes, vitamins, salt, prevacid, albuteral nebulizer, and percussion treatments with the palm cup. She has now cultured out a MRSA staph and is on Bactrim and Gentamyacin with the nebulizer. Is it common for someone so young to get MRSA and any advice on how to prevent the infections? Her mother, my daughter is a single mom, and trys her best to keep everything clean, etc. but also I feel that Ella has been exposed to more people than I would like to see. Any other grandmas out there having a hard time letting go....I am only the grandma, not the mother, but can not stop worrying, or giving my advice...or criticism. Any advice on what kind of vest would be best, and how young we could start using that. I don't feel like Ellas mother or myself for that matter do the best job with the palm cup, and it is very time consuming for her mother who is also trying to work to support the 2 of them...Any thoughts or advice would be greatly appreciated. This grandma is feeling overwhelmed with worry and concern.
 
E

Ellasgma

Guest
My granddaughter Ella was diagnosed with CF when she was 3 days old, we have been doing the enzymes, vitamins, salt, prevacid, albuteral nebulizer, and percussion treatments with the palm cup. She has now cultured out a MRSA staph and is on Bactrim and Gentamyacin with the nebulizer. Is it common for someone so young to get MRSA and any advice on how to prevent the infections? Her mother, my daughter is a single mom, and trys her best to keep everything clean, etc. but also I feel that Ella has been exposed to more people than I would like to see. Any other grandmas out there having a hard time letting go....I am only the grandma, not the mother, but can not stop worrying, or giving my advice...or criticism. Any advice on what kind of vest would be best, and how young we could start using that. I don't feel like Ellas mother or myself for that matter do the best job with the palm cup, and it is very time consuming for her mother who is also trying to work to support the 2 of them...Any thoughts or advice would be greatly appreciated. This grandma is feeling overwhelmed with worry and concern.
 
E

Ellasgma

Guest
My granddaughter Ella was diagnosed with CF when she was 3 days old, we have been doing the enzymes, vitamins, salt, prevacid, albuteral nebulizer, and percussion treatments with the palm cup. She has now cultured out a MRSA staph and is on Bactrim and Gentamyacin with the nebulizer. Is it common for someone so young to get MRSA and any advice on how to prevent the infections? Her mother, my daughter is a single mom, and trys her best to keep everything clean, etc. but also I feel that Ella has been exposed to more people than I would like to see. Any other grandmas out there having a hard time letting go....I am only the grandma, not the mother, but can not stop worrying, or giving my advice...or criticism. Any advice on what kind of vest would be best, and how young we could start using that. I don't feel like Ellas mother or myself for that matter do the best job with the palm cup, and it is very time consuming for her mother who is also trying to work to support the 2 of them...Any thoughts or advice would be greatly appreciated. This grandma is feeling overwhelmed with worry and concern.
 
E

Ellasgma

Guest
My granddaughter Ella was diagnosed with CF when she was 3 days old, we have been doing the enzymes, vitamins, salt, prevacid, albuteral nebulizer, and percussion treatments with the palm cup. She has now cultured out a MRSA staph and is on Bactrim and Gentamyacin with the nebulizer. Is it common for someone so young to get MRSA and any advice on how to prevent the infections? Her mother, my daughter is a single mom, and trys her best to keep everything clean, etc. but also I feel that Ella has been exposed to more people than I would like to see. Any other grandmas out there having a hard time letting go....I am only the grandma, not the mother, but can not stop worrying, or giving my advice...or criticism. Any advice on what kind of vest would be best, and how young we could start using that. I don't feel like Ellas mother or myself for that matter do the best job with the palm cup, and it is very time consuming for her mother who is also trying to work to support the 2 of them...Any thoughts or advice would be greatly appreciated. This grandma is feeling overwhelmed with worry and concern.
 
E

Ellasgma

Guest
My granddaughter Ella was diagnosed with CF when she was 3 days old, we have been doing the enzymes, vitamins, salt, prevacid, albuteral nebulizer, and percussion treatments with the palm cup. She has now cultured out a MRSA staph and is on Bactrim and Gentamyacin with the nebulizer. Is it common for someone so young to get MRSA and any advice on how to prevent the infections? Her mother, my daughter is a single mom, and trys her best to keep everything clean, etc. but also I feel that Ella has been exposed to more people than I would like to see. Any other grandmas out there having a hard time letting go....I am only the grandma, not the mother, but can not stop worrying, or giving my advice...or criticism. Any advice on what kind of vest would be best, and how young we could start using that. I don't feel like Ellas mother or myself for that matter do the best job with the palm cup, and it is very time consuming for her mother who is also trying to work to support the 2 of them...Any thoughts or advice would be greatly appreciated. This grandma is feeling overwhelmed with worry and concern.
 
R

Rebjane

Super Moderator
Your granddaughter is so lucky to have you. How old is she? My daughter is almost 5 with CF. It is definately ALOT of work to take care of a CF'er and your daughter is a single mom. It realy must be hard for her. It's great you are learning about CF. Preventative care is very important to lessen infections. Even with the best preventative care a CF'er can and will get sick. Manual CPT IS time-consuming but important. I did manual CPT on my daughter from the time she was born(pretty much) until she turned 2 and a couple months, now she does the VEST 3 times a day for 20 in at a time. My daughter cultured MRSA when she was 2 and a couple months, she had a rough time with it for a while, but currently she is taking oral Bactrim once a day prophylacticly(sp?) aand things are status quo. My best advice is try not to be critical of your daughter but offer help; ie cooking meals helping with her child who does not have CF(they need attention to, sometimes grandmas are the best at making someone feel special <img src="i/expressions/face-icon-small-smile.gif" border="0">) Maybe watching Ella while your daughter takes Ella to CF clinic so she can actually hear what the doctor has to say. I always had a hard time at clinic, keeping your child from crying while the CF team is overloading you with information. Come back with more questions. Hope that helps.
 
R

Rebjane

Super Moderator
Your granddaughter is so lucky to have you. How old is she? My daughter is almost 5 with CF. It is definately ALOT of work to take care of a CF'er and your daughter is a single mom. It realy must be hard for her. It's great you are learning about CF. Preventative care is very important to lessen infections. Even with the best preventative care a CF'er can and will get sick. Manual CPT IS time-consuming but important. I did manual CPT on my daughter from the time she was born(pretty much) until she turned 2 and a couple months, now she does the VEST 3 times a day for 20 in at a time. My daughter cultured MRSA when she was 2 and a couple months, she had a rough time with it for a while, but currently she is taking oral Bactrim once a day prophylacticly(sp?) aand things are status quo. My best advice is try not to be critical of your daughter but offer help; ie cooking meals helping with her child who does not have CF(they need attention to, sometimes grandmas are the best at making someone feel special <img src="i/expressions/face-icon-small-smile.gif" border="0">) Maybe watching Ella while your daughter takes Ella to CF clinic so she can actually hear what the doctor has to say. I always had a hard time at clinic, keeping your child from crying while the CF team is overloading you with information. Come back with more questions. Hope that helps.
 
R

Rebjane

Super Moderator
Your granddaughter is so lucky to have you. How old is she? My daughter is almost 5 with CF. It is definately ALOT of work to take care of a CF'er and your daughter is a single mom. It realy must be hard for her. It's great you are learning about CF. Preventative care is very important to lessen infections. Even with the best preventative care a CF'er can and will get sick. Manual CPT IS time-consuming but important. I did manual CPT on my daughter from the time she was born(pretty much) until she turned 2 and a couple months, now she does the VEST 3 times a day for 20 in at a time. My daughter cultured MRSA when she was 2 and a couple months, she had a rough time with it for a while, but currently she is taking oral Bactrim once a day prophylacticly(sp?) aand things are status quo. My best advice is try not to be critical of your daughter but offer help; ie cooking meals helping with her child who does not have CF(they need attention to, sometimes grandmas are the best at making someone feel special <img src="i/expressions/face-icon-small-smile.gif" border="0">) Maybe watching Ella while your daughter takes Ella to CF clinic so she can actually hear what the doctor has to say. I always had a hard time at clinic, keeping your child from crying while the CF team is overloading you with information. Come back with more questions. Hope that helps.
 
R

Rebjane

Super Moderator
Your granddaughter is so lucky to have you. How old is she? My daughter is almost 5 with CF. It is definately ALOT of work to take care of a CF'er and your daughter is a single mom. It realy must be hard for her. It's great you are learning about CF. Preventative care is very important to lessen infections. Even with the best preventative care a CF'er can and will get sick. Manual CPT IS time-consuming but important. I did manual CPT on my daughter from the time she was born(pretty much) until she turned 2 and a couple months, now she does the VEST 3 times a day for 20 in at a time. My daughter cultured MRSA when she was 2 and a couple months, she had a rough time with it for a while, but currently she is taking oral Bactrim once a day prophylacticly(sp?) aand things are status quo. My best advice is try not to be critical of your daughter but offer help; ie cooking meals helping with her child who does not have CF(they need attention to, sometimes grandmas are the best at making someone feel special <img src="i/expressions/face-icon-small-smile.gif" border="0">) Maybe watching Ella while your daughter takes Ella to CF clinic so she can actually hear what the doctor has to say. I always had a hard time at clinic, keeping your child from crying while the CF team is overloading you with information. Come back with more questions. Hope that helps.
 
R

Rebjane

Super Moderator
Your granddaughter is so lucky to have you. How old is she? My daughter is almost 5 with CF. It is definately ALOT of work to take care of a CF'er and your daughter is a single mom. It realy must be hard for her. It's great you are learning about CF. Preventative care is very important to lessen infections. Even with the best preventative care a CF'er can and will get sick. Manual CPT IS time-consuming but important. I did manual CPT on my daughter from the time she was born(pretty much) until she turned 2 and a couple months, now she does the VEST 3 times a day for 20 in at a time. My daughter cultured MRSA when she was 2 and a couple months, she had a rough time with it for a while, but currently she is taking oral Bactrim once a day prophylacticly(sp?) aand things are status quo. My best advice is try not to be critical of your daughter but offer help; ie cooking meals helping with her child who does not have CF(they need attention to, sometimes grandmas are the best at making someone feel special <img src="i/expressions/face-icon-small-smile.gif" border="0">) Maybe watching Ella while your daughter takes Ella to CF clinic so she can actually hear what the doctor has to say. I always had a hard time at clinic, keeping your child from crying while the CF team is overloading you with information. Come back with more questions. Hope that helps.
 
M

Mommafirst

Guest
We got the vest right around 14 months old. My daughter had been hospitalized and a very helpful RT helped with the process. It was a little big on her, but I was able to adjust. It was a blessing -- I know what you mean about the percussions. It is good to know how to do it manually, cause you never know when you won't have an outlet or electricty.

I understand your feeling helpless and critical with your daughter. I doubt she did anything wrong to cause your granddaughter to get MRSA (I'm not saying its impossible, but I doubt it). Unfortunately most of the CF bugs our kids culture are things healthy people are unknowingly exposed to regularly, only because we don't have sticky mucous, the bugs don't breed and colonize. I hope they can erradicate the MRSA and that she doesn't see a repeat for a long long time.

I wish I could be more help, but it sounds like you love and care for both your daughter and her daughter very much. Hang in there!!!
 
M

Mommafirst

Guest
We got the vest right around 14 months old. My daughter had been hospitalized and a very helpful RT helped with the process. It was a little big on her, but I was able to adjust. It was a blessing -- I know what you mean about the percussions. It is good to know how to do it manually, cause you never know when you won't have an outlet or electricty.

I understand your feeling helpless and critical with your daughter. I doubt she did anything wrong to cause your granddaughter to get MRSA (I'm not saying its impossible, but I doubt it). Unfortunately most of the CF bugs our kids culture are things healthy people are unknowingly exposed to regularly, only because we don't have sticky mucous, the bugs don't breed and colonize. I hope they can erradicate the MRSA and that she doesn't see a repeat for a long long time.

I wish I could be more help, but it sounds like you love and care for both your daughter and her daughter very much. Hang in there!!!
 
M

Mommafirst

Guest
We got the vest right around 14 months old. My daughter had been hospitalized and a very helpful RT helped with the process. It was a little big on her, but I was able to adjust. It was a blessing -- I know what you mean about the percussions. It is good to know how to do it manually, cause you never know when you won't have an outlet or electricty.

I understand your feeling helpless and critical with your daughter. I doubt she did anything wrong to cause your granddaughter to get MRSA (I'm not saying its impossible, but I doubt it). Unfortunately most of the CF bugs our kids culture are things healthy people are unknowingly exposed to regularly, only because we don't have sticky mucous, the bugs don't breed and colonize. I hope they can erradicate the MRSA and that she doesn't see a repeat for a long long time.

I wish I could be more help, but it sounds like you love and care for both your daughter and her daughter very much. Hang in there!!!
 
M

Mommafirst

Guest
We got the vest right around 14 months old. My daughter had been hospitalized and a very helpful RT helped with the process. It was a little big on her, but I was able to adjust. It was a blessing -- I know what you mean about the percussions. It is good to know how to do it manually, cause you never know when you won't have an outlet or electricty.

I understand your feeling helpless and critical with your daughter. I doubt she did anything wrong to cause your granddaughter to get MRSA (I'm not saying its impossible, but I doubt it). Unfortunately most of the CF bugs our kids culture are things healthy people are unknowingly exposed to regularly, only because we don't have sticky mucous, the bugs don't breed and colonize. I hope they can erradicate the MRSA and that she doesn't see a repeat for a long long time.

I wish I could be more help, but it sounds like you love and care for both your daughter and her daughter very much. Hang in there!!!
 
M

Mommafirst

Guest
We got the vest right around 14 months old. My daughter had been hospitalized and a very helpful RT helped with the process. It was a little big on her, but I was able to adjust. It was a blessing -- I know what you mean about the percussions. It is good to know how to do it manually, cause you never know when you won't have an outlet or electricty.

I understand your feeling helpless and critical with your daughter. I doubt she did anything wrong to cause your granddaughter to get MRSA (I'm not saying its impossible, but I doubt it). Unfortunately most of the CF bugs our kids culture are things healthy people are unknowingly exposed to regularly, only because we don't have sticky mucous, the bugs don't breed and colonize. I hope they can erradicate the MRSA and that she doesn't see a repeat for a long long time.

I wish I could be more help, but it sounds like you love and care for both your daughter and her daughter very much. Hang in there!!!
 
E

Ellasgma

Guest
Rebecca and Heather, thank you so much for taking the time to reply to my questions. My granddaughter Ella is 5, almost 6 months old. We were told by her CF drs that if the nebulized gentamyacin does not eradicate the MRSA, then she will spend 10 days in the hospital with IV antibiotics. so we are praying that this 1st round of treatment does the trick. I will talk with the RT on staff at our CF clinic and ask them to help with the process of getting a vest, thinking it may take awhile, so she would be 12-15 months old by the time we could get one. thanks again.
Barb
 
E

Ellasgma

Guest
Rebecca and Heather, thank you so much for taking the time to reply to my questions. My granddaughter Ella is 5, almost 6 months old. We were told by her CF drs that if the nebulized gentamyacin does not eradicate the MRSA, then she will spend 10 days in the hospital with IV antibiotics. so we are praying that this 1st round of treatment does the trick. I will talk with the RT on staff at our CF clinic and ask them to help with the process of getting a vest, thinking it may take awhile, so she would be 12-15 months old by the time we could get one. thanks again.
Barb
 
E

Ellasgma

Guest
Rebecca and Heather, thank you so much for taking the time to reply to my questions. My granddaughter Ella is 5, almost 6 months old. We were told by her CF drs that if the nebulized gentamyacin does not eradicate the MRSA, then she will spend 10 days in the hospital with IV antibiotics. so we are praying that this 1st round of treatment does the trick. I will talk with the RT on staff at our CF clinic and ask them to help with the process of getting a vest, thinking it may take awhile, so she would be 12-15 months old by the time we could get one. thanks again.
Barb
 
E

Ellasgma

Guest
Rebecca and Heather, thank you so much for taking the time to reply to my questions. My granddaughter Ella is 5, almost 6 months old. We were told by her CF drs that if the nebulized gentamyacin does not eradicate the MRSA, then she will spend 10 days in the hospital with IV antibiotics. so we are praying that this 1st round of treatment does the trick. I will talk with the RT on staff at our CF clinic and ask them to help with the process of getting a vest, thinking it may take awhile, so she would be 12-15 months old by the time we could get one. thanks again.
Barb
 
E

Ellasgma

Guest
Rebecca and Heather, thank you so much for taking the time to reply to my questions. My granddaughter Ella is 5, almost 6 months old. We were told by her CF drs that if the nebulized gentamyacin does not eradicate the MRSA, then she will spend 10 days in the hospital with IV antibiotics. so we are praying that this 1st round of treatment does the trick. I will talk with the RT on staff at our CF clinic and ask them to help with the process of getting a vest, thinking it may take awhile, so she would be 12-15 months old by the time we could get one. thanks again.
Barb
 
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