6 week old waiting for blood tests to come back...

[Aricia]

Hi guys,

I am new here and this looks like a great place for information and support regarding CF.

Basically, my 6 week old is awaiting the results of his blood test to determine the CF mutation(s) that he carries. He was screened positive for CF following the Newborn Screening here in Ontario. He came back with one mutation (not sure which) and we were called in to do a sweat test.

The first test came back borderline at 42 and we went in the following week for a second which came in at 43. His initial blood tests for vitamin levels etc. all came back fine, so now the wait resumes for the genetic tests.

This waiting is absolutely horrid. We did all the right testing prenatally (did not know and were not told there was a test available for CF testing) and it all came back in the clear so this potential diagnosis is a real shocker.

Has anyone else had to go through the "waiting game"? Right now he is a good little guy, gaining weight now (was a bit slow off the marker but gaining normally now) and seems healthy. I am going to assume CF and we are making plans accordingly for his future.

Its so hard... such a little, innocent, sweet guy with such a potentially devastating disease. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Thanks for reading... its helping to just type this actually.

cheers
Me

 

[Aricia]

Hi guys,

I am new here and this looks like a great place for information and support regarding CF.

Basically, my 6 week old is awaiting the results of his blood test to determine the CF mutation(s) that he carries. He was screened positive for CF following the Newborn Screening here in Ontario. He came back with one mutation (not sure which) and we were called in to do a sweat test.

The first test came back borderline at 42 and we went in the following week for a second which came in at 43. His initial blood tests for vitamin levels etc. all came back fine, so now the wait resumes for the genetic tests.

This waiting is absolutely horrid. We did all the right testing prenatally (did not know and were not told there was a test available for CF testing) and it all came back in the clear so this potential diagnosis is a real shocker.

Has anyone else had to go through the "waiting game"? Right now he is a good little guy, gaining weight now (was a bit slow off the marker but gaining normally now) and seems healthy. I am going to assume CF and we are making plans accordingly for his future.

Its so hard... such a little, innocent, sweet guy with such a potentially devastating disease. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Thanks for reading... its helping to just type this actually.

cheers
Me

 

[Aricia]

Hi guys,

I am new here and this looks like a great place for information and support regarding CF.

Basically, my 6 week old is awaiting the results of his blood test to determine the CF mutation(s) that he carries. He was screened positive for CF following the Newborn Screening here in Ontario. He came back with one mutation (not sure which) and we were called in to do a sweat test.

The first test came back borderline at 42 and we went in the following week for a second which came in at 43. His initial blood tests for vitamin levels etc. all came back fine, so now the wait resumes for the genetic tests.

This waiting is absolutely horrid. We did all the right testing prenatally (did not know and were not told there was a test available for CF testing) and it all came back in the clear so this potential diagnosis is a real shocker.

Has anyone else had to go through the "waiting game"? Right now he is a good little guy, gaining weight now (was a bit slow off the marker but gaining normally now) and seems healthy. I am going to assume CF and we are making plans accordingly for his future.

Its so hard... such a little, innocent, sweet guy with such a potentially devastating disease. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Thanks for reading... its helping to just type this actually.

cheers
Me

 

[Aricia]

Hi guys,

I am new here and this looks like a great place for information and support regarding CF.

Basically, my 6 week old is awaiting the results of his blood test to determine the CF mutation(s) that he carries. He was screened positive for CF following the Newborn Screening here in Ontario. He came back with one mutation (not sure which) and we were called in to do a sweat test.

The first test came back borderline at 42 and we went in the following week for a second which came in at 43. His initial blood tests for vitamin levels etc. all came back fine, so now the wait resumes for the genetic tests.

This waiting is absolutely horrid. We did all the right testing prenatally (did not know and were not told there was a test available for CF testing) and it all came back in the clear so this potential diagnosis is a real shocker.

Has anyone else had to go through the "waiting game"? Right now he is a good little guy, gaining weight now (was a bit slow off the marker but gaining normally now) and seems healthy. I am going to assume CF and we are making plans accordingly for his future.

Its so hard... such a little, innocent, sweet guy with such a potentially devastating disease. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Thanks for reading... its helping to just type this actually.

cheers
Me

 

[Aricia]

Hi guys,
<br />
<br />I am new here and this looks like a great place for information and support regarding CF.
<br />
<br />Basically, my 6 week old is awaiting the results of his blood test to determine the CF mutation(s) that he carries. He was screened positive for CF following the Newborn Screening here in Ontario. He came back with one mutation (not sure which) and we were called in to do a sweat test.
<br />
<br />The first test came back borderline at 42 and we went in the following week for a second which came in at 43. His initial blood tests for vitamin levels etc. all came back fine, so now the wait resumes for the genetic tests.
<br />
<br />This waiting is absolutely horrid. We did all the right testing prenatally (did not know and were not told there was a test available for CF testing) and it all came back in the clear so this potential diagnosis is a real shocker.
<br />
<br />Has anyone else had to go through the "waiting game"? Right now he is a good little guy, gaining weight now (was a bit slow off the marker but gaining normally now) and seems healthy. I am going to assume CF and we are making plans accordingly for his future.
<br />
<br />Its so hard... such a little, innocent, sweet guy with such a potentially devastating disease. <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />Thanks for reading... its helping to just type this actually.
<br />
<br />cheers
<br />Me
<br />
<br />

 

[ehtansky21]

Since he has not yet been diagnosed with CF, I would check and see if he can life insurance right now before the results come back. There are some awesome policies that can grow as your son grows without having to do a health check.
If he does come back positive for CF, he will most likely not ever be able to get life insurance.
If he does not have CF, you can cancel the policy very easily.
We have a $100,000 policy for our second boy and it costs $30 a month.

Blessings,
Missa

 

[ehtansky21]

Since he has not yet been diagnosed with CF, I would check and see if he can life insurance right now before the results come back. There are some awesome policies that can grow as your son grows without having to do a health check.
If he does come back positive for CF, he will most likely not ever be able to get life insurance.
If he does not have CF, you can cancel the policy very easily.
We have a $100,000 policy for our second boy and it costs $30 a month.

Blessings,
Missa

 

[ehtansky21]

Since he has not yet been diagnosed with CF, I would check and see if he can life insurance right now before the results come back. There are some awesome policies that can grow as your son grows without having to do a health check.
If he does come back positive for CF, he will most likely not ever be able to get life insurance.
If he does not have CF, you can cancel the policy very easily.
We have a $100,000 policy for our second boy and it costs $30 a month.

Blessings,
Missa

 

[ehtansky21]

Since he has not yet been diagnosed with CF, I would check and see if he can life insurance right now before the results come back. There are some awesome policies that can grow as your son grows without having to do a health check.
If he does come back positive for CF, he will most likely not ever be able to get life insurance.
If he does not have CF, you can cancel the policy very easily.
We have a $100,000 policy for our second boy and it costs $30 a month.

Blessings,
Missa

 

[ehtansky21]

Since he has not yet been diagnosed with CF, I would check and see if he can life insurance right now before the results come back. There are some awesome policies that can grow as your son grows without having to do a health check.
<br />If he does come back positive for CF, he will most likely not ever be able to get life insurance.
<br />If he does not have CF, you can cancel the policy very easily.
<br />We have a $100,000 policy for our second boy and it costs $30 a month.
<br />
<br />Blessings,
<br />Missa

 

[MargaritaChic]

My daughter was diagnosed at 7 days old. She is our only child. So I understand completely what you are feeling. I was devistated.

I knew nothing about CF until her diagnosis.

I had barely bonded with my child yet and suddenly she had a disease I knew nothing about. Every night when I put her to bed I dreamed that she would not be there in the morning when I woke up. Every time I looked at her I thought about losing her. I did not sleep much because I spent every minute I could on the internet looking for answers about CF. I was obcessed and scared.

Things are different now. Emma turned 1 year old recently. She is a happy, healthy, beautiful little girl. She is the light of my life! I know she will be there tomorrow and the next day when I wake up. Now I enjoy her.

Your child will grow up and be a 'normal' kid. You will need to do some extra stuff to keep him healthy and growing strong.

There are so many things in the pipeline for people with CF. Our children will be helped by the new drugs that have come out in the last 10 years and others that are being developed today.

The median age of survival for people with CF is rising. I believe today it is 36... it will continue to increase. There is so much to be hopeful for.

Congrats on your new baby boy. He will bring so much joy into your life.

 

[MargaritaChic]

My daughter was diagnosed at 7 days old. She is our only child. So I understand completely what you are feeling. I was devistated.

I knew nothing about CF until her diagnosis.

I had barely bonded with my child yet and suddenly she had a disease I knew nothing about. Every night when I put her to bed I dreamed that she would not be there in the morning when I woke up. Every time I looked at her I thought about losing her. I did not sleep much because I spent every minute I could on the internet looking for answers about CF. I was obcessed and scared.

Things are different now. Emma turned 1 year old recently. She is a happy, healthy, beautiful little girl. She is the light of my life! I know she will be there tomorrow and the next day when I wake up. Now I enjoy her.

Your child will grow up and be a 'normal' kid. You will need to do some extra stuff to keep him healthy and growing strong.

There are so many things in the pipeline for people with CF. Our children will be helped by the new drugs that have come out in the last 10 years and others that are being developed today.

The median age of survival for people with CF is rising. I believe today it is 36... it will continue to increase. There is so much to be hopeful for.

Congrats on your new baby boy. He will bring so much joy into your life.

 

[MargaritaChic]

My daughter was diagnosed at 7 days old. She is our only child. So I understand completely what you are feeling. I was devistated.

I knew nothing about CF until her diagnosis.

I had barely bonded with my child yet and suddenly she had a disease I knew nothing about. Every night when I put her to bed I dreamed that she would not be there in the morning when I woke up. Every time I looked at her I thought about losing her. I did not sleep much because I spent every minute I could on the internet looking for answers about CF. I was obcessed and scared.

Things are different now. Emma turned 1 year old recently. She is a happy, healthy, beautiful little girl. She is the light of my life! I know she will be there tomorrow and the next day when I wake up. Now I enjoy her.

Your child will grow up and be a 'normal' kid. You will need to do some extra stuff to keep him healthy and growing strong.

There are so many things in the pipeline for people with CF. Our children will be helped by the new drugs that have come out in the last 10 years and others that are being developed today.

The median age of survival for people with CF is rising. I believe today it is 36... it will continue to increase. There is so much to be hopeful for.

Congrats on your new baby boy. He will bring so much joy into your life.

 

[MargaritaChic]

My daughter was diagnosed at 7 days old. She is our only child. So I understand completely what you are feeling. I was devistated.

I knew nothing about CF until her diagnosis.

I had barely bonded with my child yet and suddenly she had a disease I knew nothing about. Every night when I put her to bed I dreamed that she would not be there in the morning when I woke up. Every time I looked at her I thought about losing her. I did not sleep much because I spent every minute I could on the internet looking for answers about CF. I was obcessed and scared.

Things are different now. Emma turned 1 year old recently. She is a happy, healthy, beautiful little girl. She is the light of my life! I know she will be there tomorrow and the next day when I wake up. Now I enjoy her.

Your child will grow up and be a 'normal' kid. You will need to do some extra stuff to keep him healthy and growing strong.

There are so many things in the pipeline for people with CF. Our children will be helped by the new drugs that have come out in the last 10 years and others that are being developed today.

The median age of survival for people with CF is rising. I believe today it is 36... it will continue to increase. There is so much to be hopeful for.

Congrats on your new baby boy. He will bring so much joy into your life.

 

[MargaritaChic]

My daughter was diagnosed at 7 days old. She is our only child. So I understand completely what you are feeling. I was devistated.
<br />
<br />I knew nothing about CF until her diagnosis.
<br />
<br />I had barely bonded with my child yet and suddenly she had a disease I knew nothing about. Every night when I put her to bed I dreamed that she would not be there in the morning when I woke up. Every time I looked at her I thought about losing her. I did not sleep much because I spent every minute I could on the internet looking for answers about CF. I was obcessed and scared.
<br />
<br />Things are different now. Emma turned 1 year old recently. She is a happy, healthy, beautiful little girl. She is the light of my life! I know she will be there tomorrow and the next day when I wake up. Now I enjoy her.
<br />
<br />Your child will grow up and be a 'normal' kid. You will need to do some extra stuff to keep him healthy and growing strong.
<br />
<br />There are so many things in the pipeline for people with CF. Our children will be helped by the new drugs that have come out in the last 10 years and others that are being developed today.
<br />
<br />The median age of survival for people with CF is rising. I believe today it is 36... it will continue to increase. There is so much to be hopeful for.
<br />
<br />Congrats on your new baby boy. He will bring so much joy into your life.
<br />
<br />

 

[babybear]

I completely understand what you are going through. We had a similar experience where they found one mutation via newborn screening. I had the experience of knowing pretty well two people who had both died due to complications with CF in their early 20's so I was really scared. It's such a helpless feeling not knowing and even though you prepare yourself for the possibility that it is true, it still completely blows you away. Feels like you're outside of yourself and just crushes you.

My daughter's baby cousin was also flagged for one mutation with the newborn screen and her sweat test was at a borderline number. They re-tested and found she did not have it.

IF your child does have CF, you will get used to the idea of it and you will do everything that you can to help keep your child healthy. And you will stop worrying everyday about it. My daughter is now 2 1/2 and she's a healthy, happy, active little girl...when people find out that she has CF, they are shocked. (I think people assume (as I did when we were testing) that people with CF look sick or are sick all of the time.) Good luck to you! Cherish your little one and have a Happy Christmas!

 

[babybear]

I completely understand what you are going through. We had a similar experience where they found one mutation via newborn screening. I had the experience of knowing pretty well two people who had both died due to complications with CF in their early 20's so I was really scared. It's such a helpless feeling not knowing and even though you prepare yourself for the possibility that it is true, it still completely blows you away. Feels like you're outside of yourself and just crushes you.

My daughter's baby cousin was also flagged for one mutation with the newborn screen and her sweat test was at a borderline number. They re-tested and found she did not have it.

IF your child does have CF, you will get used to the idea of it and you will do everything that you can to help keep your child healthy. And you will stop worrying everyday about it. My daughter is now 2 1/2 and she's a healthy, happy, active little girl...when people find out that she has CF, they are shocked. (I think people assume (as I did when we were testing) that people with CF look sick or are sick all of the time.) Good luck to you! Cherish your little one and have a Happy Christmas!

 

[babybear]

I completely understand what you are going through. We had a similar experience where they found one mutation via newborn screening. I had the experience of knowing pretty well two people who had both died due to complications with CF in their early 20's so I was really scared. It's such a helpless feeling not knowing and even though you prepare yourself for the possibility that it is true, it still completely blows you away. Feels like you're outside of yourself and just crushes you.

My daughter's baby cousin was also flagged for one mutation with the newborn screen and her sweat test was at a borderline number. They re-tested and found she did not have it.

IF your child does have CF, you will get used to the idea of it and you will do everything that you can to help keep your child healthy. And you will stop worrying everyday about it. My daughter is now 2 1/2 and she's a healthy, happy, active little girl...when people find out that she has CF, they are shocked. (I think people assume (as I did when we were testing) that people with CF look sick or are sick all of the time.) Good luck to you! Cherish your little one and have a Happy Christmas!

 

[babybear]

I completely understand what you are going through. We had a similar experience where they found one mutation via newborn screening. I had the experience of knowing pretty well two people who had both died due to complications with CF in their early 20's so I was really scared. It's such a helpless feeling not knowing and even though you prepare yourself for the possibility that it is true, it still completely blows you away. Feels like you're outside of yourself and just crushes you.

My daughter's baby cousin was also flagged for one mutation with the newborn screen and her sweat test was at a borderline number. They re-tested and found she did not have it.

IF your child does have CF, you will get used to the idea of it and you will do everything that you can to help keep your child healthy. And you will stop worrying everyday about it. My daughter is now 2 1/2 and she's a healthy, happy, active little girl...when people find out that she has CF, they are shocked. (I think people assume (as I did when we were testing) that people with CF look sick or are sick all of the time.) Good luck to you! Cherish your little one and have a Happy Christmas!

 

[babybear]

I completely understand what you are going through. We had a similar experience where they found one mutation via newborn screening. I had the experience of knowing pretty well two people who had both died due to complications with CF in their early 20's so I was really scared. It's such a helpless feeling not knowing and even though you prepare yourself for the possibility that it is true, it still completely blows you away. Feels like you're outside of yourself and just crushes you.
<br />
<br />My daughter's baby cousin was also flagged for one mutation with the newborn screen and her sweat test was at a borderline number. They re-tested and found she did not have it.
<br />
<br />IF your child does have CF, you will get used to the idea of it and you will do everything that you can to help keep your child healthy. And you will stop worrying everyday about it. My daughter is now 2 1/2 and she's a healthy, happy, active little girl...when people find out that she has CF, they are shocked. (I think people assume (as I did when we were testing) that people with CF look sick or are sick all of the time.) Good luck to you! Cherish your little one and have a Happy Christmas!