new & waiting.........

LisaMK1377 · Oct 11, 2008

My youngest child is 4 1/2. I took him to a well child visit a few weeks back and his dr was concerned with his size. She said he wasn't just small, he was abnormally small. Anyhow, she had us go to the hospital for some tests. He had a sweat test done, (which I've never heard of before then) as well as some blood work. She called a few days later, said the bloodwork seemed fine, but the sweat test was a bit above the borderline range. (it was 65) We went in for a second sweat test this week and also more blood work for genetic testing. 2nd test came back a little higher at 70. The genetic test results haven't came back yet though. His dr told me not to panic because we need to see what the genetic test says, but everything that I have read says that 2 abnormal sweat tests is basically a diagnosis for CF. I cannot help but to panic and wonder what he's going to go through. She did mention him seeing a dr 3 hours from here to have his lungs checked. I've been reading everything I can about CF, but as you all know, the Internet can give you scary results. I am hoping to get some realistic advice and information here. I do not know how I am going to get through the weekend wondering if I should be worried to death about my son or not. I think I am just in denial at this point. If anyone has any thoughts, please let me know. Thanks for reading this.

LisaMK1377 · Oct 11, 2008

My youngest child is 4 1/2. I took him to a well child visit a few weeks back and his dr was concerned with his size. She said he wasn't just small, he was abnormally small. Anyhow, she had us go to the hospital for some tests. He had a sweat test done, (which I've never heard of before then) as well as some blood work. She called a few days later, said the bloodwork seemed fine, but the sweat test was a bit above the borderline range. (it was 65) We went in for a second sweat test this week and also more blood work for genetic testing. 2nd test came back a little higher at 70. The genetic test results haven't came back yet though. His dr told me not to panic because we need to see what the genetic test says, but everything that I have read says that 2 abnormal sweat tests is basically a diagnosis for CF. I cannot help but to panic and wonder what he's going to go through. She did mention him seeing a dr 3 hours from here to have his lungs checked. I've been reading everything I can about CF, but as you all know, the Internet can give you scary results. I am hoping to get some realistic advice and information here. I do not know how I am going to get through the weekend wondering if I should be worried to death about my son or not. I think I am just in denial at this point. If anyone has any thoughts, please let me know. Thanks for reading this.

LisaMK1377 · Oct 11, 2008

My youngest child is 4 1/2. I took him to a well child visit a few weeks back and his dr was concerned with his size. She said he wasn't just small, he was abnormally small. Anyhow, she had us go to the hospital for some tests. He had a sweat test done, (which I've never heard of before then) as well as some blood work. She called a few days later, said the bloodwork seemed fine, but the sweat test was a bit above the borderline range. (it was 65) We went in for a second sweat test this week and also more blood work for genetic testing. 2nd test came back a little higher at 70. The genetic test results haven't came back yet though. His dr told me not to panic because we need to see what the genetic test says, but everything that I have read says that 2 abnormal sweat tests is basically a diagnosis for CF. I cannot help but to panic and wonder what he's going to go through. She did mention him seeing a dr 3 hours from here to have his lungs checked. I've been reading everything I can about CF, but as you all know, the Internet can give you scary results. I am hoping to get some realistic advice and information here. I do not know how I am going to get through the weekend wondering if I should be worried to death about my son or not. I think I am just in denial at this point. If anyone has any thoughts, please let me know. Thanks for reading this.

LisaMK1377 · Oct 11, 2008

My youngest child is 4 1/2. I took him to a well child visit a few weeks back and his dr was concerned with his size. She said he wasn't just small, he was abnormally small. Anyhow, she had us go to the hospital for some tests. He had a sweat test done, (which I've never heard of before then) as well as some blood work. She called a few days later, said the bloodwork seemed fine, but the sweat test was a bit above the borderline range. (it was 65) We went in for a second sweat test this week and also more blood work for genetic testing. 2nd test came back a little higher at 70. The genetic test results haven't came back yet though. His dr told me not to panic because we need to see what the genetic test says, but everything that I have read says that 2 abnormal sweat tests is basically a diagnosis for CF. I cannot help but to panic and wonder what he's going to go through. She did mention him seeing a dr 3 hours from here to have his lungs checked. I've been reading everything I can about CF, but as you all know, the Internet can give you scary results. I am hoping to get some realistic advice and information here. I do not know how I am going to get through the weekend wondering if I should be worried to death about my son or not. I think I am just in denial at this point. If anyone has any thoughts, please let me know. Thanks for reading this.

LisaMK1377 · Oct 11, 2008

My youngest child is 4 1/2. I took him to a well child visit a few weeks back and his dr was concerned with his size. She said he wasn't just small, he was abnormally small. Anyhow, she had us go to the hospital for some tests. He had a sweat test done, (which I've never heard of before then) as well as some blood work. She called a few days later, said the bloodwork seemed fine, but the sweat test was a bit above the borderline range. (it was 65) We went in for a second sweat test this week and also more blood work for genetic testing. 2nd test came back a little higher at 70. The genetic test results haven't came back yet though. His dr told me not to panic because we need to see what the genetic test says, but everything that I have read says that 2 abnormal sweat tests is basically a diagnosis for CF. I cannot help but to panic and wonder what he's going to go through. She did mention him seeing a dr 3 hours from here to have his lungs checked. I've been reading everything I can about CF, but as you all know, the Internet can give you scary results. I am hoping to get some realistic advice and information here. I do not know how I am going to get through the weekend wondering if I should be worried to death about my son or not. I think I am just in denial at this point. If anyone has any thoughts, please let me know. Thanks for reading this.

Rebjane · Oct 11, 2008

First of all, welcome to this site; there is a great amount of information and support here. Also, please be careful with what you read and research online and in reading about CF. Some of the information is outdated and inaccurate. A very reliable source of information on CF is the Cystic Fibrosis Foundation. Their website is www.cff.org. Your son's doctor is probably going to send you to a CF clinic(the doc 3 hours away). You should make sure the CF clinic is accrediated through the CFF website; you can look up your location online on the CFF website at www.cff.org. The genetic test is not back yet; but it sounds like with 2 positive sweat tests they are leaning to a CF diagnosis. The good news is your son is going to get healthier! The treatments and medications that will be prescribed will most likely make your son grow and be sick less often. There is so much hope in the CF world. New treatments of several different types are in the works. My daughter is now almost 6 with CF and an outgoing, strong, smart funny kid. Be strong; you WILL get through this. This site is a great site to vent and ask questions....We've heard them all.

Rebjane · Oct 11, 2008

First of all, welcome to this site; there is a great amount of information and support here. Also, please be careful with what you read and research online and in reading about CF. Some of the information is outdated and inaccurate. A very reliable source of information on CF is the Cystic Fibrosis Foundation. Their website is www.cff.org. Your son's doctor is probably going to send you to a CF clinic(the doc 3 hours away). You should make sure the CF clinic is accrediated through the CFF website; you can look up your location online on the CFF website at www.cff.org. The genetic test is not back yet; but it sounds like with 2 positive sweat tests they are leaning to a CF diagnosis. The good news is your son is going to get healthier! The treatments and medications that will be prescribed will most likely make your son grow and be sick less often. There is so much hope in the CF world. New treatments of several different types are in the works. My daughter is now almost 6 with CF and an outgoing, strong, smart funny kid. Be strong; you WILL get through this. This site is a great site to vent and ask questions....We've heard them all.

Rebjane · Oct 11, 2008

First of all, welcome to this site; there is a great amount of information and support here. Also, please be careful with what you read and research online and in reading about CF. Some of the information is outdated and inaccurate. A very reliable source of information on CF is the Cystic Fibrosis Foundation. Their website is www.cff.org. Your son's doctor is probably going to send you to a CF clinic(the doc 3 hours away). You should make sure the CF clinic is accrediated through the CFF website; you can look up your location online on the CFF website at www.cff.org. The genetic test is not back yet; but it sounds like with 2 positive sweat tests they are leaning to a CF diagnosis. The good news is your son is going to get healthier! The treatments and medications that will be prescribed will most likely make your son grow and be sick less often. There is so much hope in the CF world. New treatments of several different types are in the works. My daughter is now almost 6 with CF and an outgoing, strong, smart funny kid. Be strong; you WILL get through this. This site is a great site to vent and ask questions....We've heard them all.

Rebjane · Oct 11, 2008

First of all, welcome to this site; there is a great amount of information and support here. Also, please be careful with what you read and research online and in reading about CF. Some of the information is outdated and inaccurate. A very reliable source of information on CF is the Cystic Fibrosis Foundation. Their website is www.cff.org. Your son's doctor is probably going to send you to a CF clinic(the doc 3 hours away). You should make sure the CF clinic is accrediated through the CFF website; you can look up your location online on the CFF website at www.cff.org. The genetic test is not back yet; but it sounds like with 2 positive sweat tests they are leaning to a CF diagnosis. The good news is your son is going to get healthier! The treatments and medications that will be prescribed will most likely make your son grow and be sick less often. There is so much hope in the CF world. New treatments of several different types are in the works. My daughter is now almost 6 with CF and an outgoing, strong, smart funny kid. Be strong; you WILL get through this. This site is a great site to vent and ask questions....We've heard them all.

Rebjane · Oct 11, 2008

First of all, welcome to this site; there is a great amount of information and support here. Also, please be careful with what you read and research online and in reading about CF. Some of the information is outdated and inaccurate. A very reliable source of information on CF is the Cystic Fibrosis Foundation. Their website is www.cff.org. Your son's doctor is probably going to send you to a CF clinic(the doc 3 hours away). You should make sure the CF clinic is accrediated through the CFF website; you can look up your location online on the CFF website at www.cff.org. The genetic test is not back yet; but it sounds like with 2 positive sweat tests they are leaning to a CF diagnosis. The good news is your son is going to get healthier! The treatments and medications that will be prescribed will most likely make your son grow and be sick less often. There is so much hope in the CF world. New treatments of several different types are in the works. My daughter is now almost 6 with CF and an outgoing, strong, smart funny kid. Be strong; you WILL get through this. This site is a great site to vent and ask questions....We've heard them all.

JazzysMom · Oct 11, 2008

First of all WELCOME even if its only while looking for answers!

Secondly was the sweat tests done at accredited CF Centers? This is important to avoid inaccurate results.

Presuming it was then chances are high that CF is the culprit tho there are some meds & a few other illnesses that can cause high sweat tests results. This is why genetic testing as a follow up is important.

I appreciate you trying to educate yourself, but YES the internet can be scary becauses you find a lot of blunt, harsh & OLD info.

I would recommend that if it comes back that your child has CF, try not to focus on the fact that he has it as much as you found out in earlier years to get the best care to him as possible.

I cant tell you not to worry because that is what us Moms do....worry! What I can tell you is that you are not alone although you might feel like it....

We are here to answer questions, calm your nerves & wipe the tears (virtually of course LOL) during the process.

HUGS to give you strength during the finding out period!!!

JazzysMom · Oct 11, 2008

First of all WELCOME even if its only while looking for answers!

Secondly was the sweat tests done at accredited CF Centers? This is important to avoid inaccurate results.

Presuming it was then chances are high that CF is the culprit tho there are some meds & a few other illnesses that can cause high sweat tests results. This is why genetic testing as a follow up is important.

I appreciate you trying to educate yourself, but YES the internet can be scary becauses you find a lot of blunt, harsh & OLD info.

I would recommend that if it comes back that your child has CF, try not to focus on the fact that he has it as much as you found out in earlier years to get the best care to him as possible.

I cant tell you not to worry because that is what us Moms do....worry! What I can tell you is that you are not alone although you might feel like it....

We are here to answer questions, calm your nerves & wipe the tears (virtually of course LOL) during the process.

HUGS to give you strength during the finding out period!!!

JazzysMom · Oct 11, 2008

First of all WELCOME even if its only while looking for answers!

Secondly was the sweat tests done at accredited CF Centers? This is important to avoid inaccurate results.

Presuming it was then chances are high that CF is the culprit tho there are some meds & a few other illnesses that can cause high sweat tests results. This is why genetic testing as a follow up is important.

I appreciate you trying to educate yourself, but YES the internet can be scary becauses you find a lot of blunt, harsh & OLD info.

I would recommend that if it comes back that your child has CF, try not to focus on the fact that he has it as much as you found out in earlier years to get the best care to him as possible.

I cant tell you not to worry because that is what us Moms do....worry! What I can tell you is that you are not alone although you might feel like it....

We are here to answer questions, calm your nerves & wipe the tears (virtually of course LOL) during the process.

HUGS to give you strength during the finding out period!!!

JazzysMom · Oct 11, 2008

First of all WELCOME even if its only while looking for answers!

Secondly was the sweat tests done at accredited CF Centers? This is important to avoid inaccurate results.

Presuming it was then chances are high that CF is the culprit tho there are some meds & a few other illnesses that can cause high sweat tests results. This is why genetic testing as a follow up is important.

I appreciate you trying to educate yourself, but YES the internet can be scary becauses you find a lot of blunt, harsh & OLD info.

I would recommend that if it comes back that your child has CF, try not to focus on the fact that he has it as much as you found out in earlier years to get the best care to him as possible.

I cant tell you not to worry because that is what us Moms do....worry! What I can tell you is that you are not alone although you might feel like it....

We are here to answer questions, calm your nerves & wipe the tears (virtually of course LOL) during the process.

HUGS to give you strength during the finding out period!!!

JazzysMom · Oct 11, 2008

First of all WELCOME even if its only while looking for answers!
 
 Secondly was the sweat tests done at accredited CF Centers? This is important to avoid inaccurate results.
 
 Presuming it was then chances are high that CF is the culprit tho there are some meds & a few other illnesses that can cause high sweat tests results. This is why genetic testing as a follow up is important.
 
 I appreciate you trying to educate yourself, but YES the internet can be scary becauses you find a lot of blunt, harsh & OLD info.
 
 I would recommend that if it comes back that your child has CF, try not to focus on the fact that he has it as much as you found out in earlier years to get the best care to him as possible.
 
 I cant tell you not to worry because that is what us Moms do....worry! What I can tell you is that you are not alone although you might feel like it....
 
 We are here to answer questions, calm your nerves & wipe the tears (virtually of course LOL) during the process.
 
 HUGS to give you strength during the finding out period!!!

happyone · Oct 11, 2008

Welcome to the site... while I hope you don't have a need to become a regular, this is really a wonderfully supportive and informative site.
We've all been where you are right now, and it's a horrible thing to have to go through. Finding out your child is not so healthy is an abosolute nightmare. HOWEVER, thing DO get better. It becomes a part of life.... not something you worry about every minute. And as others said, a lot of the info online is out of date. For now, take it a day at a time... and remember that your son is still the same fun-loving 4 1/2 year old he was before!

happyone · Oct 11, 2008

Welcome to the site... while I hope you don't have a need to become a regular, this is really a wonderfully supportive and informative site.
We've all been where you are right now, and it's a horrible thing to have to go through. Finding out your child is not so healthy is an abosolute nightmare. HOWEVER, thing DO get better. It becomes a part of life.... not something you worry about every minute. And as others said, a lot of the info online is out of date. For now, take it a day at a time... and remember that your son is still the same fun-loving 4 1/2 year old he was before!

happyone · Oct 11, 2008

Welcome to the site... while I hope you don't have a need to become a regular, this is really a wonderfully supportive and informative site.
We've all been where you are right now, and it's a horrible thing to have to go through. Finding out your child is not so healthy is an abosolute nightmare. HOWEVER, thing DO get better. It becomes a part of life.... not something you worry about every minute. And as others said, a lot of the info online is out of date. For now, take it a day at a time... and remember that your son is still the same fun-loving 4 1/2 year old he was before!

happyone · Oct 11, 2008

Welcome to the site... while I hope you don't have a need to become a regular, this is really a wonderfully supportive and informative site.
We've all been where you are right now, and it's a horrible thing to have to go through. Finding out your child is not so healthy is an abosolute nightmare. HOWEVER, thing DO get better. It becomes a part of life.... not something you worry about every minute. And as others said, a lot of the info online is out of date. For now, take it a day at a time... and remember that your son is still the same fun-loving 4 1/2 year old he was before!

happyone · Oct 11, 2008

Welcome to the site... while I hope you don't have a need to become a regular, this is really a wonderfully supportive and informative site.
 We've all been where you are right now, and it's a horrible thing to have to go through. Finding out your child is not so healthy is an abosolute nightmare. HOWEVER, thing DO get better. It becomes a part of life.... not something you worry about every minute. And as others said, a lot of the info online is out of date. For now, take it a day at a time... and remember that your son is still the same fun-loving 4 1/2 year old he was before!

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