Help please !!!

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taty05

New member
My 6 year old son was diagnosed w/cf on 01/09, then my 8 year old symptomless daughter on 04/09,, they both are doing fine for now, my son is taking his meds of course. It is me the one that is still on denail, I still walk into the clinic hoping that they are going to say it was a mistake and that my kids were misdiagnosed since they have not find the mutation that they have. I was just told that I needed to go to counseling, but I don't know were to start, CF is bad as it is, but to make things worse I'm alone on this, my family is not informed nor involved in this condition since is very rare in Hispanics, I guess they are only used to deal with either diabitis or high blood pressure wich seem to be more frecuent in our racial everyday thing. I think it would be very helpfull to meet or chat with parents that know what I'm going thru. Thanks ahead.


Taty05 mom of 5, Alleyne 9, Esperanza 8 w/cf, Jesus 6 w/cf, Eisa 4 not sure yet, and Cesar 4 months.
 
T

taty05

New member
My 6 year old son was diagnosed w/cf on 01/09, then my 8 year old symptomless daughter on 04/09,, they both are doing fine for now, my son is taking his meds of course. It is me the one that is still on denail, I still walk into the clinic hoping that they are going to say it was a mistake and that my kids were misdiagnosed since they have not find the mutation that they have. I was just told that I needed to go to counseling, but I don't know were to start, CF is bad as it is, but to make things worse I'm alone on this, my family is not informed nor involved in this condition since is very rare in Hispanics, I guess they are only used to deal with either diabitis or high blood pressure wich seem to be more frecuent in our racial everyday thing. I think it would be very helpfull to meet or chat with parents that know what I'm going thru. Thanks ahead.


Taty05 mom of 5, Alleyne 9, Esperanza 8 w/cf, Jesus 6 w/cf, Eisa 4 not sure yet, and Cesar 4 months.
 
T

taty05

New member
My 6 year old son was diagnosed w/cf on 01/09, then my 8 year old symptomless daughter on 04/09,, they both are doing fine for now, my son is taking his meds of course. It is me the one that is still on denail, I still walk into the clinic hoping that they are going to say it was a mistake and that my kids were misdiagnosed since they have not find the mutation that they have. I was just told that I needed to go to counseling, but I don't know were to start, CF is bad as it is, but to make things worse I'm alone on this, my family is not informed nor involved in this condition since is very rare in Hispanics, I guess they are only used to deal with either diabitis or high blood pressure wich seem to be more frecuent in our racial everyday thing. I think it would be very helpfull to meet or chat with parents that know what I'm going thru. Thanks ahead.


Taty05 mom of 5, Alleyne 9, Esperanza 8 w/cf, Jesus 6 w/cf, Eisa 4 not sure yet, and Cesar 4 months.
 
T

taty05

New member
My 6 year old son was diagnosed w/cf on 01/09, then my 8 year old symptomless daughter on 04/09,, they both are doing fine for now, my son is taking his meds of course. It is me the one that is still on denail, I still walk into the clinic hoping that they are going to say it was a mistake and that my kids were misdiagnosed since they have not find the mutation that they have. I was just told that I needed to go to counseling, but I don't know were to start, CF is bad as it is, but to make things worse I'm alone on this, my family is not informed nor involved in this condition since is very rare in Hispanics, I guess they are only used to deal with either diabitis or high blood pressure wich seem to be more frecuent in our racial everyday thing. I think it would be very helpfull to meet or chat with parents that know what I'm going thru. Thanks ahead.


Taty05 mom of 5, Alleyne 9, Esperanza 8 w/cf, Jesus 6 w/cf, Eisa 4 not sure yet, and Cesar 4 months.
 
T

taty05

New member
My 6 year old son was diagnosed w/cf on 01/09, then my 8 year old symptomless daughter on 04/09,, they both are doing fine for now, my son is taking his meds of course. It is me the one that is still on denail, I still walk into the clinic hoping that they are going to say it was a mistake and that my kids were misdiagnosed since they have not find the mutation that they have. I was just told that I needed to go to counseling, but I don't know were to start, CF is bad as it is, but to make things worse I'm alone on this, my family is not informed nor involved in this condition since is very rare in Hispanics, I guess they are only used to deal with either diabitis or high blood pressure wich seem to be more frecuent in our racial everyday thing. I think it would be very helpfull to meet or chat with parents that know what I'm going thru. Thanks ahead.
<br />
<br />
<br />Taty05 mom of 5, Alleyne 9, Esperanza 8 w/cf, Jesus 6 w/cf, Eisa 4 not sure yet, and Cesar 4 months.
 
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rpcvchina

New member
I feel the same way. I think denial is part of the process, like when someone dies. Getting the diagnosis of this disease for multiple children is, in a way, like something dieing-- the normal life you had, the things you expected would happen in your child's future (like marriage, kids, etc.) and the worry starts. I feel a slave to the worry about germs, my marriage, their future, etc. Our daughter was born in April and then our 3 year old was diagnosed because of her health problems. It's much harder for me that the 3 year old has it than just the baby. I feel like I was robbed of my healthy child and his future. The baby we found out about from the second day, but our son was otherwise healthy except a runny nose. I feel like maybe I could handle one, but two with it is so overwhelming.

-- Denise
 
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rpcvchina

New member
I feel the same way. I think denial is part of the process, like when someone dies. Getting the diagnosis of this disease for multiple children is, in a way, like something dieing-- the normal life you had, the things you expected would happen in your child's future (like marriage, kids, etc.) and the worry starts. I feel a slave to the worry about germs, my marriage, their future, etc. Our daughter was born in April and then our 3 year old was diagnosed because of her health problems. It's much harder for me that the 3 year old has it than just the baby. I feel like I was robbed of my healthy child and his future. The baby we found out about from the second day, but our son was otherwise healthy except a runny nose. I feel like maybe I could handle one, but two with it is so overwhelming.

-- Denise
 
R

rpcvchina

New member
I feel the same way. I think denial is part of the process, like when someone dies. Getting the diagnosis of this disease for multiple children is, in a way, like something dieing-- the normal life you had, the things you expected would happen in your child's future (like marriage, kids, etc.) and the worry starts. I feel a slave to the worry about germs, my marriage, their future, etc. Our daughter was born in April and then our 3 year old was diagnosed because of her health problems. It's much harder for me that the 3 year old has it than just the baby. I feel like I was robbed of my healthy child and his future. The baby we found out about from the second day, but our son was otherwise healthy except a runny nose. I feel like maybe I could handle one, but two with it is so overwhelming.

-- Denise
 
R

rpcvchina

New member
I feel the same way. I think denial is part of the process, like when someone dies. Getting the diagnosis of this disease for multiple children is, in a way, like something dieing-- the normal life you had, the things you expected would happen in your child's future (like marriage, kids, etc.) and the worry starts. I feel a slave to the worry about germs, my marriage, their future, etc. Our daughter was born in April and then our 3 year old was diagnosed because of her health problems. It's much harder for me that the 3 year old has it than just the baby. I feel like I was robbed of my healthy child and his future. The baby we found out about from the second day, but our son was otherwise healthy except a runny nose. I feel like maybe I could handle one, but two with it is so overwhelming.

-- Denise
 
R

rpcvchina

New member
I feel the same way. I think denial is part of the process, like when someone dies. Getting the diagnosis of this disease for multiple children is, in a way, like something dieing-- the normal life you had, the things you expected would happen in your child's future (like marriage, kids, etc.) and the worry starts. I feel a slave to the worry about germs, my marriage, their future, etc. Our daughter was born in April and then our 3 year old was diagnosed because of her health problems. It's much harder for me that the 3 year old has it than just the baby. I feel like I was robbed of my healthy child and his future. The baby we found out about from the second day, but our son was otherwise healthy except a runny nose. I feel like maybe I could handle one, but two with it is so overwhelming.
<br />
<br />-- Denise
 
R

Ratatosk

Administrator
Staff member
I think we've all gone thru the period of denial. For us it was there was confusion with test results -- a couple inconclusivie blood tests, normal sweat test -- yet he had meconium illeus and one positive blood test. So we kept thinking the same thing -- at some point we'd be told it was all a mistake. Also, no family history and both sides have extensive geneology records that go back hundreds of years -- think there was one stillbirth in the 1940s, otherwise no early deaths, symptoms of digestive or lung disease...

Little by little we became educated, as did our family members. I think what hit home for them was this past summer when out of the blue DS ended up in the hospital due to digestive problems. Prior to that I think everyone just put cf in the back of their minds, forgetting how serious it can be.

All we can do is take things one step at a time, try to do what's best for our kids and easier said than done -- not panic or worry constantly. They're still kids who want to do normal every day things.
 
R

Ratatosk

Administrator
Staff member
I think we've all gone thru the period of denial. For us it was there was confusion with test results -- a couple inconclusivie blood tests, normal sweat test -- yet he had meconium illeus and one positive blood test. So we kept thinking the same thing -- at some point we'd be told it was all a mistake. Also, no family history and both sides have extensive geneology records that go back hundreds of years -- think there was one stillbirth in the 1940s, otherwise no early deaths, symptoms of digestive or lung disease...

Little by little we became educated, as did our family members. I think what hit home for them was this past summer when out of the blue DS ended up in the hospital due to digestive problems. Prior to that I think everyone just put cf in the back of their minds, forgetting how serious it can be.

All we can do is take things one step at a time, try to do what's best for our kids and easier said than done -- not panic or worry constantly. They're still kids who want to do normal every day things.
 
R

Ratatosk

Administrator
Staff member
I think we've all gone thru the period of denial. For us it was there was confusion with test results -- a couple inconclusivie blood tests, normal sweat test -- yet he had meconium illeus and one positive blood test. So we kept thinking the same thing -- at some point we'd be told it was all a mistake. Also, no family history and both sides have extensive geneology records that go back hundreds of years -- think there was one stillbirth in the 1940s, otherwise no early deaths, symptoms of digestive or lung disease...

Little by little we became educated, as did our family members. I think what hit home for them was this past summer when out of the blue DS ended up in the hospital due to digestive problems. Prior to that I think everyone just put cf in the back of their minds, forgetting how serious it can be.

All we can do is take things one step at a time, try to do what's best for our kids and easier said than done -- not panic or worry constantly. They're still kids who want to do normal every day things.
 
R

Ratatosk

Administrator
Staff member
I think we've all gone thru the period of denial. For us it was there was confusion with test results -- a couple inconclusivie blood tests, normal sweat test -- yet he had meconium illeus and one positive blood test. So we kept thinking the same thing -- at some point we'd be told it was all a mistake. Also, no family history and both sides have extensive geneology records that go back hundreds of years -- think there was one stillbirth in the 1940s, otherwise no early deaths, symptoms of digestive or lung disease...

Little by little we became educated, as did our family members. I think what hit home for them was this past summer when out of the blue DS ended up in the hospital due to digestive problems. Prior to that I think everyone just put cf in the back of their minds, forgetting how serious it can be.

All we can do is take things one step at a time, try to do what's best for our kids and easier said than done -- not panic or worry constantly. They're still kids who want to do normal every day things.
 
R

Ratatosk

Administrator
Staff member
I think we've all gone thru the period of denial. For us it was there was confusion with test results -- a couple inconclusivie blood tests, normal sweat test -- yet he had meconium illeus and one positive blood test. So we kept thinking the same thing -- at some point we'd be told it was all a mistake. Also, no family history and both sides have extensive geneology records that go back hundreds of years -- think there was one stillbirth in the 1940s, otherwise no early deaths, symptoms of digestive or lung disease...
<br />
<br />Little by little we became educated, as did our family members. I think what hit home for them was this past summer when out of the blue DS ended up in the hospital due to digestive problems. Prior to that I think everyone just put cf in the back of their minds, forgetting how serious it can be.
<br />
<br />All we can do is take things one step at a time, try to do what's best for our kids and easier said than done -- not panic or worry constantly. They're still kids who want to do normal every day things.
 
J

JORDYSMOM

New member
Welcome to the site Taty. I'm sorry you are going through this. I know how scary it is to get the diagnosis.

This site helped me so much, because it's full of good information, and learning more about CF helped me to feel more comfortable with it. The think that helped me the most though, was that I saw people with CF on here who were grown ups. They were working, raising families, and living life to the fullest. That gave me hope, and we all need hope.

It will get easier as you go along. It will always be scary though. Ask any questions you want, and someone here will have the answer.

Take care.

Stacey
 
J

JORDYSMOM

New member
Welcome to the site Taty. I'm sorry you are going through this. I know how scary it is to get the diagnosis.

This site helped me so much, because it's full of good information, and learning more about CF helped me to feel more comfortable with it. The think that helped me the most though, was that I saw people with CF on here who were grown ups. They were working, raising families, and living life to the fullest. That gave me hope, and we all need hope.

It will get easier as you go along. It will always be scary though. Ask any questions you want, and someone here will have the answer.

Take care.

Stacey
 
J

JORDYSMOM

New member
Welcome to the site Taty. I'm sorry you are going through this. I know how scary it is to get the diagnosis.

This site helped me so much, because it's full of good information, and learning more about CF helped me to feel more comfortable with it. The think that helped me the most though, was that I saw people with CF on here who were grown ups. They were working, raising families, and living life to the fullest. That gave me hope, and we all need hope.

It will get easier as you go along. It will always be scary though. Ask any questions you want, and someone here will have the answer.

Take care.

Stacey
 
J

JORDYSMOM

New member
Welcome to the site Taty. I'm sorry you are going through this. I know how scary it is to get the diagnosis.

This site helped me so much, because it's full of good information, and learning more about CF helped me to feel more comfortable with it. The think that helped me the most though, was that I saw people with CF on here who were grown ups. They were working, raising families, and living life to the fullest. That gave me hope, and we all need hope.

It will get easier as you go along. It will always be scary though. Ask any questions you want, and someone here will have the answer.

Take care.

Stacey
 
J

JORDYSMOM

New member
Welcome to the site Taty. I'm sorry you are going through this. I know how scary it is to get the diagnosis.
<br />
<br />This site helped me so much, because it's full of good information, and learning more about CF helped me to feel more comfortable with it. The think that helped me the most though, was that I saw people with CF on here who were grown ups. They were working, raising families, and living life to the fullest. That gave me hope, and we all need hope.
<br />
<br />It will get easier as you go along. It will always be scary though. Ask any questions you want, and someone here will have the answer.
<br />
<br />Take care.
<br />
<br />Stacey
 
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