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[lilismom]

I am so sorry you've had such a hard couple of weeks. My daughter was diagnosed last year at the age of 3 and it has been hard to deal with. I found this site a couple of months ago and have found some great info on it.
I'm pretty sure genetic testing is pretty standard after a sweat test is positive. My daughter had it done at the hospital when she was diagnosed, they only found 1 gene through the standard test but at some point we'll have further analysis done.

Please remember you are not alone in this and there are so many people here that can help you get through this.

 

[lilismom]

I am so sorry you've had such a hard couple of weeks. My daughter was diagnosed last year at the age of 3 and it has been hard to deal with. I found this site a couple of months ago and have found some great info on it.
I'm pretty sure genetic testing is pretty standard after a sweat test is positive. My daughter had it done at the hospital when she was diagnosed, they only found 1 gene through the standard test but at some point we'll have further analysis done.

Please remember you are not alone in this and there are so many people here that can help you get through this.

 

[lilismom]

I am so sorry you've had such a hard couple of weeks. My daughter was diagnosed last year at the age of 3 and it has been hard to deal with. I found this site a couple of months ago and have found some great info on it.
I'm pretty sure genetic testing is pretty standard after a sweat test is positive. My daughter had it done at the hospital when she was diagnosed, they only found 1 gene through the standard test but at some point we'll have further analysis done.

Please remember you are not alone in this and there are so many people here that can help you get through this.

 

[lilismom]

I am so sorry you've had such a hard couple of weeks. My daughter was diagnosed last year at the age of 3 and it has been hard to deal with. I found this site a couple of months ago and have found some great info on it.
I'm pretty sure genetic testing is pretty standard after a sweat test is positive. My daughter had it done at the hospital when she was diagnosed, they only found 1 gene through the standard test but at some point we'll have further analysis done.

Please remember you are not alone in this and there are so many people here that can help you get through this.

 

[grannylana]

I will confirm what the others have told you and get the test done then you have the knowledge and knowledge is power. I also just found this web site and it is a great tool to lean on so use it to its fullest. These parents arent doctors but might as well be since some have been dealing with this for more years than most physicians.

My granddaughter is improving daily and gaining weight with the enzymes she probably needed months - maybe years ago. Today she turned 6 and we are just in the process of looking for her mutations after 2 positive sweat tests.
So ask the questions and demand the answers.
You are the mom - and mom knows best -lol.

Sorry for your trying weeks but they will improve!

Grannylana

 

[grannylana]

I will confirm what the others have told you and get the test done then you have the knowledge and knowledge is power. I also just found this web site and it is a great tool to lean on so use it to its fullest. These parents arent doctors but might as well be since some have been dealing with this for more years than most physicians.

My granddaughter is improving daily and gaining weight with the enzymes she probably needed months - maybe years ago. Today she turned 6 and we are just in the process of looking for her mutations after 2 positive sweat tests.
So ask the questions and demand the answers.
You are the mom - and mom knows best -lol.

Sorry for your trying weeks but they will improve!

Grannylana

 

[grannylana]

I will confirm what the others have told you and get the test done then you have the knowledge and knowledge is power. I also just found this web site and it is a great tool to lean on so use it to its fullest. These parents arent doctors but might as well be since some have been dealing with this for more years than most physicians.

My granddaughter is improving daily and gaining weight with the enzymes she probably needed months - maybe years ago. Today she turned 6 and we are just in the process of looking for her mutations after 2 positive sweat tests.
So ask the questions and demand the answers.
You are the mom - and mom knows best -lol.

Sorry for your trying weeks but they will improve!

Grannylana

 

[grannylana]

I will confirm what the others have told you and get the test done then you have the knowledge and knowledge is power. I also just found this web site and it is a great tool to lean on so use it to its fullest. These parents arent doctors but might as well be since some have been dealing with this for more years than most physicians.

My granddaughter is improving daily and gaining weight with the enzymes she probably needed months - maybe years ago. Today she turned 6 and we are just in the process of looking for her mutations after 2 positive sweat tests.
So ask the questions and demand the answers.
You are the mom - and mom knows best -lol.

Sorry for your trying weeks but they will improve!

Grannylana

 

[grannylana]

I will confirm what the others have told you and get the test done then you have the knowledge and knowledge is power. I also just found this web site and it is a great tool to lean on so use it to its fullest. These parents arent doctors but might as well be since some have been dealing with this for more years than most physicians.

My granddaughter is improving daily and gaining weight with the enzymes she probably needed months - maybe years ago. Today she turned 6 and we are just in the process of looking for her mutations after 2 positive sweat tests.
So ask the questions and demand the answers.
You are the mom - and mom knows best -lol.

Sorry for your trying weeks but they will improve!

Grannylana

 

[grannylana]

I will confirm what the others have told you and get the test done then you have the knowledge and knowledge is power. I also just found this web site and it is a great tool to lean on so use it to its fullest. These parents arent doctors but might as well be since some have been dealing with this for more years than most physicians.

My granddaughter is improving daily and gaining weight with the enzymes she probably needed months - maybe years ago. Today she turned 6 and we are just in the process of looking for her mutations after 2 positive sweat tests.
So ask the questions and demand the answers.
You are the mom - and mom knows best -lol.

Sorry for your trying weeks but they will improve!

Grannylana

 

[Brando]

Thank you for your responses. This is still all so scary and new, but I am finding it does help to know that there are other people out there that know what I'm going through. Our family and friends are very supportive, but they can't possibly know how this feels. Not only is the diagnosis overwhelming, so is getting used to the new things we have to do for them. We already have him on enzymes and new formula. Taking care of a new born and a 2 1/2 year old is hard work the way it is. We'll see what happens tomorrow @ our daughter's appt. and whether or not they put her on enzymes. I know one day enzymes and chest therapy will be second nature, but for now it is still all very overwhelming! Thanks again.

 

[Brando]

Thank you for your responses. This is still all so scary and new, but I am finding it does help to know that there are other people out there that know what I'm going through. Our family and friends are very supportive, but they can't possibly know how this feels. Not only is the diagnosis overwhelming, so is getting used to the new things we have to do for them. We already have him on enzymes and new formula. Taking care of a new born and a 2 1/2 year old is hard work the way it is. We'll see what happens tomorrow @ our daughter's appt. and whether or not they put her on enzymes. I know one day enzymes and chest therapy will be second nature, but for now it is still all very overwhelming! Thanks again.

 

[Brando]

Thank you for your responses. This is still all so scary and new, but I am finding it does help to know that there are other people out there that know what I'm going through. Our family and friends are very supportive, but they can't possibly know how this feels. Not only is the diagnosis overwhelming, so is getting used to the new things we have to do for them. We already have him on enzymes and new formula. Taking care of a new born and a 2 1/2 year old is hard work the way it is. We'll see what happens tomorrow @ our daughter's appt. and whether or not they put her on enzymes. I know one day enzymes and chest therapy will be second nature, but for now it is still all very overwhelming! Thanks again.

 

[Brando]

Thank you for your responses. This is still all so scary and new, but I am finding it does help to know that there are other people out there that know what I'm going through. Our family and friends are very supportive, but they can't possibly know how this feels. Not only is the diagnosis overwhelming, so is getting used to the new things we have to do for them. We already have him on enzymes and new formula. Taking care of a new born and a 2 1/2 year old is hard work the way it is. We'll see what happens tomorrow @ our daughter's appt. and whether or not they put her on enzymes. I know one day enzymes and chest therapy will be second nature, but for now it is still all very overwhelming! Thanks again.

 

[Brando]

Thank you for your responses. This is still all so scary and new, but I am finding it does help to know that there are other people out there that know what I'm going through. Our family and friends are very supportive, but they can't possibly know how this feels. Not only is the diagnosis overwhelming, so is getting used to the new things we have to do for them. We already have him on enzymes and new formula. Taking care of a new born and a 2 1/2 year old is hard work the way it is. We'll see what happens tomorrow @ our daughter's appt. and whether or not they put her on enzymes. I know one day enzymes and chest therapy will be second nature, but for now it is still all very overwhelming! Thanks again.

 

[Brando]

Thank you for your responses. This is still all so scary and new, but I am finding it does help to know that there are other people out there that know what I'm going through. Our family and friends are very supportive, but they can't possibly know how this feels. Not only is the diagnosis overwhelming, so is getting used to the new things we have to do for them. We already have him on enzymes and new formula. Taking care of a new born and a 2 1/2 year old is hard work the way it is. We'll see what happens tomorrow @ our daughter's appt. and whether or not they put her on enzymes. I know one day enzymes and chest therapy will be second nature, but for now it is still all very overwhelming! Thanks again.

 

[Ratatosk]

Just take it one step at a time. It's overwhelming at first, but pretty soon the meds and treatments will be second nature. While I wasn't happy about it -- wished DS hadn't been diagnosed at birth, so we could just enjoy him as a baby, it was a good thing -- that we could start CPT, nebulizer treatments, enzymes, etc. right away. I still get kinda cranky when the doctor adds another drug -- think it took me half a year to get over the addition of pulmozyme and zithromax. Just seems like one more thing to remember. But then I tell myself, what are our choices -- can't just give up. We gotta do what we can to keep DS happy and healthy.

Easier said than done, but one of DS's doctors early on gave us this advice "try not to dwell on the CF diagnosis. If you have to, limit yourself to 15 minutes a day". So I just tried to focus on enjoying my baby.

The first few months I kept lists of the meds we gave DS, when we gave those to him, how much formula he drank, number of enzymes, poop... We were going to clinic appointments every 2-3 months, so they'd need to know all the gory details. Nowdays, I still keep track of his meds -- keep a white board in the kitchen cupboard.

 

[Ratatosk]

Just take it one step at a time. It's overwhelming at first, but pretty soon the meds and treatments will be second nature. While I wasn't happy about it -- wished DS hadn't been diagnosed at birth, so we could just enjoy him as a baby, it was a good thing -- that we could start CPT, nebulizer treatments, enzymes, etc. right away. I still get kinda cranky when the doctor adds another drug -- think it took me half a year to get over the addition of pulmozyme and zithromax. Just seems like one more thing to remember. But then I tell myself, what are our choices -- can't just give up. We gotta do what we can to keep DS happy and healthy.

Easier said than done, but one of DS's doctors early on gave us this advice "try not to dwell on the CF diagnosis. If you have to, limit yourself to 15 minutes a day". So I just tried to focus on enjoying my baby.

The first few months I kept lists of the meds we gave DS, when we gave those to him, how much formula he drank, number of enzymes, poop... We were going to clinic appointments every 2-3 months, so they'd need to know all the gory details. Nowdays, I still keep track of his meds -- keep a white board in the kitchen cupboard.

 

[Ratatosk]

Just take it one step at a time. It's overwhelming at first, but pretty soon the meds and treatments will be second nature. While I wasn't happy about it -- wished DS hadn't been diagnosed at birth, so we could just enjoy him as a baby, it was a good thing -- that we could start CPT, nebulizer treatments, enzymes, etc. right away. I still get kinda cranky when the doctor adds another drug -- think it took me half a year to get over the addition of pulmozyme and zithromax. Just seems like one more thing to remember. But then I tell myself, what are our choices -- can't just give up. We gotta do what we can to keep DS happy and healthy.

Easier said than done, but one of DS's doctors early on gave us this advice "try not to dwell on the CF diagnosis. If you have to, limit yourself to 15 minutes a day". So I just tried to focus on enjoying my baby.

The first few months I kept lists of the meds we gave DS, when we gave those to him, how much formula he drank, number of enzymes, poop... We were going to clinic appointments every 2-3 months, so they'd need to know all the gory details. Nowdays, I still keep track of his meds -- keep a white board in the kitchen cupboard.

 

[Ratatosk]

Just take it one step at a time. It's overwhelming at first, but pretty soon the meds and treatments will be second nature. While I wasn't happy about it -- wished DS hadn't been diagnosed at birth, so we could just enjoy him as a baby, it was a good thing -- that we could start CPT, nebulizer treatments, enzymes, etc. right away. I still get kinda cranky when the doctor adds another drug -- think it took me half a year to get over the addition of pulmozyme and zithromax. Just seems like one more thing to remember. But then I tell myself, what are our choices -- can't just give up. We gotta do what we can to keep DS happy and healthy.

Easier said than done, but one of DS's doctors early on gave us this advice "try not to dwell on the CF diagnosis. If you have to, limit yourself to 15 minutes a day". So I just tried to focus on enjoying my baby.

The first few months I kept lists of the meds we gave DS, when we gave those to him, how much formula he drank, number of enzymes, poop... We were going to clinic appointments every 2-3 months, so they'd need to know all the gory details. Nowdays, I still keep track of his meds -- keep a white board in the kitchen cupboard.