23-Month-Old Just Diagnosed, Now I Worry About My Older Kids

HopeyC1972

New member
My 23-month-old son was just diagnosed with CF a few days ago and I am still pretty much in a state of shock. His growth started falling off the curve at around 9 months old, and by 15 months, he was off the charts. At around 7 months old, he developed a cold that never ended and had constant ear infections and chest congestion for the next 8 months. The ear infections responded to anti-biotics, but the chest congestion never did, and I guess now I know why. During this time he had tons of blood work done--from thyroid function tests, Celiac disease, you name it and everything came back normal. In April, my pediatrician finally ordered a sweat test and good God did he drag his heels on getting the results. He said the lab called him to say the results were not CF, but he was waiting to see a pathology report. I heard nothing so assumed everything was fine, and a month later at my son's well visit, I brought the sweat test up again and the doctor was like, "Oh, yeah, the report confuses me so I will call the pathologist and let you know if there is any problem." At the time I also informed him we would be re-locating for my husband's job, but we didn't move till nearly 3 months later, and I heard nothing and again assumed all was fine. By then, the congestion had finally cleared and my son had actually gained 2 lbs at his 18-month visit in our new state and town. In October, I had to contact the old ped for some records for my daughters, and got a fax with Jacob's records as well with a note on the bottom of one page saying he needed a follow up for an abnormal sweat test. I called the ped immediately to find out why I never knew this and his answer was that I left town. I said, yeah, but 4 months AFTER he had the sweat test done, plus his office had all my forwarding info.

Anyway, I made him send me a copy of the sweat test results, especially because by now the congestion had come back in full force. I made an appt. with a pulmonologist for Nov. 19, and we went through everything. She sent him for another sweat test on Dec. 3 and also tested his poop, and did blood work for certain vitamins, allergies and pancreatic function. Of the blood and poop tests, all came back normal except for the allergies. But the sweat test was once again borderline. She decided he had asthma because of the allergy tests, and that sweat tests also come back borderline due to asthma, so we started treating him for that. But, to be on the safe side and rule out CF 100%, she ran an Ambry genetic test, and just this week it came back positive for CF and I could barely believe it. He seems to have the DeltaF508 mutation and the (TG)12-5T, which I am told usually results in a milder form of the disease, but this still scares the crap out of me. I am taking him to a CF center this coming Wednesday, and the pulmonologist said they will probably want to test my girls, who except for being small (but have remained consistent on the growth charts, unlike my son)have never exhibited any symptoms. They have never had one ear infection, get sick maybe once a year briefly, and my oldest actually never had a cold till she was 2 years old. I just can't imagine they could have CF, but know stranger things have happened.

OK, I guess I don't really have a question here. I guess I just needed a place to get this all out where maybe SOMEBODY would understand. My DH refuses to discuss it and there is nobody with any experience with CF on the parening message boards I frequent. And until April, all I ever really knew of CF was an old ER episode from about 12 years ago where Doug Ross had to extubate an 18-yr-old with it who wanted to finally die. That, and a very sad Belva Plain book I read back in college. Since April when this possibility was presented to me, I have educated myself a lot more, but still feel I have so much to learn to be an advocate for my son.
 

HopeyC1972

New member
My 23-month-old son was just diagnosed with CF a few days ago and I am still pretty much in a state of shock. His growth started falling off the curve at around 9 months old, and by 15 months, he was off the charts. At around 7 months old, he developed a cold that never ended and had constant ear infections and chest congestion for the next 8 months. The ear infections responded to anti-biotics, but the chest congestion never did, and I guess now I know why. During this time he had tons of blood work done--from thyroid function tests, Celiac disease, you name it and everything came back normal. In April, my pediatrician finally ordered a sweat test and good God did he drag his heels on getting the results. He said the lab called him to say the results were not CF, but he was waiting to see a pathology report. I heard nothing so assumed everything was fine, and a month later at my son's well visit, I brought the sweat test up again and the doctor was like, "Oh, yeah, the report confuses me so I will call the pathologist and let you know if there is any problem." At the time I also informed him we would be re-locating for my husband's job, but we didn't move till nearly 3 months later, and I heard nothing and again assumed all was fine. By then, the congestion had finally cleared and my son had actually gained 2 lbs at his 18-month visit in our new state and town. In October, I had to contact the old ped for some records for my daughters, and got a fax with Jacob's records as well with a note on the bottom of one page saying he needed a follow up for an abnormal sweat test. I called the ped immediately to find out why I never knew this and his answer was that I left town. I said, yeah, but 4 months AFTER he had the sweat test done, plus his office had all my forwarding info.

Anyway, I made him send me a copy of the sweat test results, especially because by now the congestion had come back in full force. I made an appt. with a pulmonologist for Nov. 19, and we went through everything. She sent him for another sweat test on Dec. 3 and also tested his poop, and did blood work for certain vitamins, allergies and pancreatic function. Of the blood and poop tests, all came back normal except for the allergies. But the sweat test was once again borderline. She decided he had asthma because of the allergy tests, and that sweat tests also come back borderline due to asthma, so we started treating him for that. But, to be on the safe side and rule out CF 100%, she ran an Ambry genetic test, and just this week it came back positive for CF and I could barely believe it. He seems to have the DeltaF508 mutation and the (TG)12-5T, which I am told usually results in a milder form of the disease, but this still scares the crap out of me. I am taking him to a CF center this coming Wednesday, and the pulmonologist said they will probably want to test my girls, who except for being small (but have remained consistent on the growth charts, unlike my son)have never exhibited any symptoms. They have never had one ear infection, get sick maybe once a year briefly, and my oldest actually never had a cold till she was 2 years old. I just can't imagine they could have CF, but know stranger things have happened.

OK, I guess I don't really have a question here. I guess I just needed a place to get this all out where maybe SOMEBODY would understand. My DH refuses to discuss it and there is nobody with any experience with CF on the parening message boards I frequent. And until April, all I ever really knew of CF was an old ER episode from about 12 years ago where Doug Ross had to extubate an 18-yr-old with it who wanted to finally die. That, and a very sad Belva Plain book I read back in college. Since April when this possibility was presented to me, I have educated myself a lot more, but still feel I have so much to learn to be an advocate for my son.
 

HopeyC1972

New member
My 23-month-old son was just diagnosed with CF a few days ago and I am still pretty much in a state of shock. His growth started falling off the curve at around 9 months old, and by 15 months, he was off the charts. At around 7 months old, he developed a cold that never ended and had constant ear infections and chest congestion for the next 8 months. The ear infections responded to anti-biotics, but the chest congestion never did, and I guess now I know why. During this time he had tons of blood work done--from thyroid function tests, Celiac disease, you name it and everything came back normal. In April, my pediatrician finally ordered a sweat test and good God did he drag his heels on getting the results. He said the lab called him to say the results were not CF, but he was waiting to see a pathology report. I heard nothing so assumed everything was fine, and a month later at my son's well visit, I brought the sweat test up again and the doctor was like, "Oh, yeah, the report confuses me so I will call the pathologist and let you know if there is any problem." At the time I also informed him we would be re-locating for my husband's job, but we didn't move till nearly 3 months later, and I heard nothing and again assumed all was fine. By then, the congestion had finally cleared and my son had actually gained 2 lbs at his 18-month visit in our new state and town. In October, I had to contact the old ped for some records for my daughters, and got a fax with Jacob's records as well with a note on the bottom of one page saying he needed a follow up for an abnormal sweat test. I called the ped immediately to find out why I never knew this and his answer was that I left town. I said, yeah, but 4 months AFTER he had the sweat test done, plus his office had all my forwarding info.

Anyway, I made him send me a copy of the sweat test results, especially because by now the congestion had come back in full force. I made an appt. with a pulmonologist for Nov. 19, and we went through everything. She sent him for another sweat test on Dec. 3 and also tested his poop, and did blood work for certain vitamins, allergies and pancreatic function. Of the blood and poop tests, all came back normal except for the allergies. But the sweat test was once again borderline. She decided he had asthma because of the allergy tests, and that sweat tests also come back borderline due to asthma, so we started treating him for that. But, to be on the safe side and rule out CF 100%, she ran an Ambry genetic test, and just this week it came back positive for CF and I could barely believe it. He seems to have the DeltaF508 mutation and the (TG)12-5T, which I am told usually results in a milder form of the disease, but this still scares the crap out of me. I am taking him to a CF center this coming Wednesday, and the pulmonologist said they will probably want to test my girls, who except for being small (but have remained consistent on the growth charts, unlike my son)have never exhibited any symptoms. They have never had one ear infection, get sick maybe once a year briefly, and my oldest actually never had a cold till she was 2 years old. I just can't imagine they could have CF, but know stranger things have happened.

OK, I guess I don't really have a question here. I guess I just needed a place to get this all out where maybe SOMEBODY would understand. My DH refuses to discuss it and there is nobody with any experience with CF on the parening message boards I frequent. And until April, all I ever really knew of CF was an old ER episode from about 12 years ago where Doug Ross had to extubate an 18-yr-old with it who wanted to finally die. That, and a very sad Belva Plain book I read back in college. Since April when this possibility was presented to me, I have educated myself a lot more, but still feel I have so much to learn to be an advocate for my son.
 

HopeyC1972

New member
My 23-month-old son was just diagnosed with CF a few days ago and I am still pretty much in a state of shock. His growth started falling off the curve at around 9 months old, and by 15 months, he was off the charts. At around 7 months old, he developed a cold that never ended and had constant ear infections and chest congestion for the next 8 months. The ear infections responded to anti-biotics, but the chest congestion never did, and I guess now I know why. During this time he had tons of blood work done--from thyroid function tests, Celiac disease, you name it and everything came back normal. In April, my pediatrician finally ordered a sweat test and good God did he drag his heels on getting the results. He said the lab called him to say the results were not CF, but he was waiting to see a pathology report. I heard nothing so assumed everything was fine, and a month later at my son's well visit, I brought the sweat test up again and the doctor was like, "Oh, yeah, the report confuses me so I will call the pathologist and let you know if there is any problem." At the time I also informed him we would be re-locating for my husband's job, but we didn't move till nearly 3 months later, and I heard nothing and again assumed all was fine. By then, the congestion had finally cleared and my son had actually gained 2 lbs at his 18-month visit in our new state and town. In October, I had to contact the old ped for some records for my daughters, and got a fax with Jacob's records as well with a note on the bottom of one page saying he needed a follow up for an abnormal sweat test. I called the ped immediately to find out why I never knew this and his answer was that I left town. I said, yeah, but 4 months AFTER he had the sweat test done, plus his office had all my forwarding info.

Anyway, I made him send me a copy of the sweat test results, especially because by now the congestion had come back in full force. I made an appt. with a pulmonologist for Nov. 19, and we went through everything. She sent him for another sweat test on Dec. 3 and also tested his poop, and did blood work for certain vitamins, allergies and pancreatic function. Of the blood and poop tests, all came back normal except for the allergies. But the sweat test was once again borderline. She decided he had asthma because of the allergy tests, and that sweat tests also come back borderline due to asthma, so we started treating him for that. But, to be on the safe side and rule out CF 100%, she ran an Ambry genetic test, and just this week it came back positive for CF and I could barely believe it. He seems to have the DeltaF508 mutation and the (TG)12-5T, which I am told usually results in a milder form of the disease, but this still scares the crap out of me. I am taking him to a CF center this coming Wednesday, and the pulmonologist said they will probably want to test my girls, who except for being small (but have remained consistent on the growth charts, unlike my son)have never exhibited any symptoms. They have never had one ear infection, get sick maybe once a year briefly, and my oldest actually never had a cold till she was 2 years old. I just can't imagine they could have CF, but know stranger things have happened.

OK, I guess I don't really have a question here. I guess I just needed a place to get this all out where maybe SOMEBODY would understand. My DH refuses to discuss it and there is nobody with any experience with CF on the parening message boards I frequent. And until April, all I ever really knew of CF was an old ER episode from about 12 years ago where Doug Ross had to extubate an 18-yr-old with it who wanted to finally die. That, and a very sad Belva Plain book I read back in college. Since April when this possibility was presented to me, I have educated myself a lot more, but still feel I have so much to learn to be an advocate for my son.
 

HopeyC1972

New member
My 23-month-old son was just diagnosed with CF a few days ago and I am still pretty much in a state of shock. His growth started falling off the curve at around 9 months old, and by 15 months, he was off the charts. At around 7 months old, he developed a cold that never ended and had constant ear infections and chest congestion for the next 8 months. The ear infections responded to anti-biotics, but the chest congestion never did, and I guess now I know why. During this time he had tons of blood work done--from thyroid function tests, Celiac disease, you name it and everything came back normal. In April, my pediatrician finally ordered a sweat test and good God did he drag his heels on getting the results. He said the lab called him to say the results were not CF, but he was waiting to see a pathology report. I heard nothing so assumed everything was fine, and a month later at my son's well visit, I brought the sweat test up again and the doctor was like, "Oh, yeah, the report confuses me so I will call the pathologist and let you know if there is any problem." At the time I also informed him we would be re-locating for my husband's job, but we didn't move till nearly 3 months later, and I heard nothing and again assumed all was fine. By then, the congestion had finally cleared and my son had actually gained 2 lbs at his 18-month visit in our new state and town. In October, I had to contact the old ped for some records for my daughters, and got a fax with Jacob's records as well with a note on the bottom of one page saying he needed a follow up for an abnormal sweat test. I called the ped immediately to find out why I never knew this and his answer was that I left town. I said, yeah, but 4 months AFTER he had the sweat test done, plus his office had all my forwarding info.
<br />
<br />Anyway, I made him send me a copy of the sweat test results, especially because by now the congestion had come back in full force. I made an appt. with a pulmonologist for Nov. 19, and we went through everything. She sent him for another sweat test on Dec. 3 and also tested his poop, and did blood work for certain vitamins, allergies and pancreatic function. Of the blood and poop tests, all came back normal except for the allergies. But the sweat test was once again borderline. She decided he had asthma because of the allergy tests, and that sweat tests also come back borderline due to asthma, so we started treating him for that. But, to be on the safe side and rule out CF 100%, she ran an Ambry genetic test, and just this week it came back positive for CF and I could barely believe it. He seems to have the DeltaF508 mutation and the (TG)12-5T, which I am told usually results in a milder form of the disease, but this still scares the crap out of me. I am taking him to a CF center this coming Wednesday, and the pulmonologist said they will probably want to test my girls, who except for being small (but have remained consistent on the growth charts, unlike my son)have never exhibited any symptoms. They have never had one ear infection, get sick maybe once a year briefly, and my oldest actually never had a cold till she was 2 years old. I just can't imagine they could have CF, but know stranger things have happened.
<br />
<br />OK, I guess I don't really have a question here. I guess I just needed a place to get this all out where maybe SOMEBODY would understand. My DH refuses to discuss it and there is nobody with any experience with CF on the parening message boards I frequent. And until April, all I ever really knew of CF was an old ER episode from about 12 years ago where Doug Ross had to extubate an 18-yr-old with it who wanted to finally die. That, and a very sad Belva Plain book I read back in college. Since April when this possibility was presented to me, I have educated myself a lot more, but still feel I have so much to learn to be an advocate for my son.
 

debs2girls

New member
Hope, I am so sorry for the circumstances that brought you here, but I would like to welcome you to the "family". This is a great place for support, love, friendship, comfort, encouragement and suggestions.
The story about Jacob could very well be several of us here writing about our child(ren).
Dont think any question you may have it a crazy one...there will be someone here that can help you with the answer.
Good luck on your journey...sometime the road is rough, but we will all be here to help you.
Love and hugs,
Debbie
 

debs2girls

New member
Hope, I am so sorry for the circumstances that brought you here, but I would like to welcome you to the "family". This is a great place for support, love, friendship, comfort, encouragement and suggestions.
The story about Jacob could very well be several of us here writing about our child(ren).
Dont think any question you may have it a crazy one...there will be someone here that can help you with the answer.
Good luck on your journey...sometime the road is rough, but we will all be here to help you.
Love and hugs,
Debbie
 

debs2girls

New member
Hope, I am so sorry for the circumstances that brought you here, but I would like to welcome you to the "family". This is a great place for support, love, friendship, comfort, encouragement and suggestions.
The story about Jacob could very well be several of us here writing about our child(ren).
Dont think any question you may have it a crazy one...there will be someone here that can help you with the answer.
Good luck on your journey...sometime the road is rough, but we will all be here to help you.
Love and hugs,
Debbie
 

debs2girls

New member
Hope, I am so sorry for the circumstances that brought you here, but I would like to welcome you to the "family". This is a great place for support, love, friendship, comfort, encouragement and suggestions.
The story about Jacob could very well be several of us here writing about our child(ren).
Dont think any question you may have it a crazy one...there will be someone here that can help you with the answer.
Good luck on your journey...sometime the road is rough, but we will all be here to help you.
Love and hugs,
Debbie
 

debs2girls

New member
Hope, I am so sorry for the circumstances that brought you here, but I would like to welcome you to the "family". This is a great place for support, love, friendship, comfort, encouragement and suggestions.
<br />The story about Jacob could very well be several of us here writing about our child(ren).
<br />Dont think any question you may have it a crazy one...there will be someone here that can help you with the answer.
<br />Good luck on your journey...sometime the road is rough, but we will all be here to help you.
<br />Love and hugs,
<br />Debbie
 

JazzysMom

New member
WOW....what a time you had!

OK that is in the past, this is now & you found us!

First of all WELCOME. Although its a lousy way to meet us, we are one heck of a group of people.

You will see a huge difference in your childs care once a routine & meds are worked out. As to your other children....if nothing else I suggest having them tested to find out if they are carriers.

Yes there is the possibility that CF exists, but dont focus on that just yet. One thing at a time since they seem to be ok.

I might suggest you get a notebook if you dont already have one to write down any questions, concerns for your appointment with the CF clinic. This way you wont forget. Trust me tell when I say you think you might remember it all, but you wont <img src="i/expressions/face-icon-small-tongue.gif" border="0">

It will be harder until your husband is able to discuss it with you, but thats what we are here for.

Anytime you can post a thread/message & someone normally responds quickly. If you find the time & desire we have a chat around 8PM Eastern Time almost every night to get to know us better.

Dont be afraid to ask anything.

HUGS
 

JazzysMom

New member
WOW....what a time you had!

OK that is in the past, this is now & you found us!

First of all WELCOME. Although its a lousy way to meet us, we are one heck of a group of people.

You will see a huge difference in your childs care once a routine & meds are worked out. As to your other children....if nothing else I suggest having them tested to find out if they are carriers.

Yes there is the possibility that CF exists, but dont focus on that just yet. One thing at a time since they seem to be ok.

I might suggest you get a notebook if you dont already have one to write down any questions, concerns for your appointment with the CF clinic. This way you wont forget. Trust me tell when I say you think you might remember it all, but you wont <img src="i/expressions/face-icon-small-tongue.gif" border="0">

It will be harder until your husband is able to discuss it with you, but thats what we are here for.

Anytime you can post a thread/message & someone normally responds quickly. If you find the time & desire we have a chat around 8PM Eastern Time almost every night to get to know us better.

Dont be afraid to ask anything.

HUGS
 

JazzysMom

New member
WOW....what a time you had!

OK that is in the past, this is now & you found us!

First of all WELCOME. Although its a lousy way to meet us, we are one heck of a group of people.

You will see a huge difference in your childs care once a routine & meds are worked out. As to your other children....if nothing else I suggest having them tested to find out if they are carriers.

Yes there is the possibility that CF exists, but dont focus on that just yet. One thing at a time since they seem to be ok.

I might suggest you get a notebook if you dont already have one to write down any questions, concerns for your appointment with the CF clinic. This way you wont forget. Trust me tell when I say you think you might remember it all, but you wont <img src="i/expressions/face-icon-small-tongue.gif" border="0">

It will be harder until your husband is able to discuss it with you, but thats what we are here for.

Anytime you can post a thread/message & someone normally responds quickly. If you find the time & desire we have a chat around 8PM Eastern Time almost every night to get to know us better.

Dont be afraid to ask anything.

HUGS
 

JazzysMom

New member
WOW....what a time you had!

OK that is in the past, this is now & you found us!

First of all WELCOME. Although its a lousy way to meet us, we are one heck of a group of people.

You will see a huge difference in your childs care once a routine & meds are worked out. As to your other children....if nothing else I suggest having them tested to find out if they are carriers.

Yes there is the possibility that CF exists, but dont focus on that just yet. One thing at a time since they seem to be ok.

I might suggest you get a notebook if you dont already have one to write down any questions, concerns for your appointment with the CF clinic. This way you wont forget. Trust me tell when I say you think you might remember it all, but you wont <img src="i/expressions/face-icon-small-tongue.gif" border="0">

It will be harder until your husband is able to discuss it with you, but thats what we are here for.

Anytime you can post a thread/message & someone normally responds quickly. If you find the time & desire we have a chat around 8PM Eastern Time almost every night to get to know us better.

Dont be afraid to ask anything.

HUGS
 

JazzysMom

New member
WOW....what a time you had!
<br />
<br />OK that is in the past, this is now & you found us!
<br />
<br />First of all WELCOME. Although its a lousy way to meet us, we are one heck of a group of people.
<br />
<br />You will see a huge difference in your childs care once a routine & meds are worked out. As to your other children....if nothing else I suggest having them tested to find out if they are carriers.
<br />
<br />Yes there is the possibility that CF exists, but dont focus on that just yet. One thing at a time since they seem to be ok.
<br />
<br />I might suggest you get a notebook if you dont already have one to write down any questions, concerns for your appointment with the CF clinic. This way you wont forget. Trust me tell when I say you think you might remember it all, but you wont <img src="i/expressions/face-icon-small-tongue.gif" border="0">
<br />
<br />It will be harder until your husband is able to discuss it with you, but thats what we are here for.
<br />
<br />Anytime you can post a thread/message & someone normally responds quickly. If you find the time & desire we have a chat around 8PM Eastern Time almost every night to get to know us better.
<br />
<br />Dont be afraid to ask anything.
<br />
<br />HUGS
 

pnhuffman

New member
I would also like to welcome you to this site. You have come to the right place. Like Melissa said one thing at a time. And definetely get yourself a notebook to take notes at the clinic. It will be so overwhelming at first. And write down any questions you may want to ask. Because in the midst of everything you will forget.

Anyways welcome to the site.
 

pnhuffman

New member
I would also like to welcome you to this site. You have come to the right place. Like Melissa said one thing at a time. And definetely get yourself a notebook to take notes at the clinic. It will be so overwhelming at first. And write down any questions you may want to ask. Because in the midst of everything you will forget.

Anyways welcome to the site.
 

pnhuffman

New member
I would also like to welcome you to this site. You have come to the right place. Like Melissa said one thing at a time. And definetely get yourself a notebook to take notes at the clinic. It will be so overwhelming at first. And write down any questions you may want to ask. Because in the midst of everything you will forget.

Anyways welcome to the site.
 

pnhuffman

New member
I would also like to welcome you to this site. You have come to the right place. Like Melissa said one thing at a time. And definetely get yourself a notebook to take notes at the clinic. It will be so overwhelming at first. And write down any questions you may want to ask. Because in the midst of everything you will forget.

Anyways welcome to the site.
 

pnhuffman

New member
I would also like to welcome you to this site. You have come to the right place. Like Melissa said one thing at a time. And definetely get yourself a notebook to take notes at the clinic. It will be so overwhelming at first. And write down any questions you may want to ask. Because in the midst of everything you will forget.
<br />
<br />Anyways welcome to the site.
 
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