Newly diagnosed and scared to death

[billsmom]

I would love for anyone to give me some positive feedback, please.

My son is 22 mos. old. From birth, he was a normal, fat, healthy baby. He always pooped a lot, but that was all we noticed "odd" about him.

He got a cold in early Jan. It wouldn't get better. It was just a clear runny nose and cough. I didn't take him to the doc at first cause I thought just common cold. When the fever came back, I took him in. Over the next few weeks, he tested neg. to a bunch of virus' (flu, RSV), and doc put him on antibiotic (amox). His breathing still was labored, and chest xray showed some "interstitial pneumonitis". Doctor was totally baffled and ended up admitting him with pretty bad dehydration and retracting.

He was in the hospital for four days. He perked up, got much better, and was released. But the pediatrician still wanted him to follow up with Hopkins Pulmonary Peds specialists... after asking me a ton of questions, the specialist sent him for a sweat test last Monday. She told us he did not present like most CF patients, so he prob just had asthma and allergies, but we would need to rule it out.

Here I am one week later, positively in shock and devastated to learn that my son has this disease, and he also has Pa (the bacteria). That fact scares me - A LOT.

My son has already had two appts at Hopkins CF clinic. They say his xrays look GOOD, and they think there is a better than 50% chance of killing the Pa. He has gained a pound in five days after starting enzyme treatments.

His will start two straight 28 day rounds of TOBI, beginning tonight (I am waiting for it to be delivered to my pharmacy). In addition, he takes Albuterol and Flovent with an inhaler and spacer. He takes singulair granuals once a day, enzymes with all food, multi vitamin.

This Pa thing scares me - that he is only 22 mos. old and already has it... I am very thankful that we found out with his first lung infection, but I am also freaking out - wanting so badly to find some evidence of a cure out there - clinging to any hopes of my son still being able to have a wonderful life.

Please - anyone that can take some time to give me some really positive news... I would appreciate it so much.

 

[billsmom]

I would love for anyone to give me some positive feedback, please.

My son is 22 mos. old. From birth, he was a normal, fat, healthy baby. He always pooped a lot, but that was all we noticed "odd" about him.

He got a cold in early Jan. It wouldn't get better. It was just a clear runny nose and cough. I didn't take him to the doc at first cause I thought just common cold. When the fever came back, I took him in. Over the next few weeks, he tested neg. to a bunch of virus' (flu, RSV), and doc put him on antibiotic (amox). His breathing still was labored, and chest xray showed some "interstitial pneumonitis". Doctor was totally baffled and ended up admitting him with pretty bad dehydration and retracting.

He was in the hospital for four days. He perked up, got much better, and was released. But the pediatrician still wanted him to follow up with Hopkins Pulmonary Peds specialists... after asking me a ton of questions, the specialist sent him for a sweat test last Monday. She told us he did not present like most CF patients, so he prob just had asthma and allergies, but we would need to rule it out.

Here I am one week later, positively in shock and devastated to learn that my son has this disease, and he also has Pa (the bacteria). That fact scares me - A LOT.

My son has already had two appts at Hopkins CF clinic. They say his xrays look GOOD, and they think there is a better than 50% chance of killing the Pa. He has gained a pound in five days after starting enzyme treatments.

His will start two straight 28 day rounds of TOBI, beginning tonight (I am waiting for it to be delivered to my pharmacy). In addition, he takes Albuterol and Flovent with an inhaler and spacer. He takes singulair granuals once a day, enzymes with all food, multi vitamin.

This Pa thing scares me - that he is only 22 mos. old and already has it... I am very thankful that we found out with his first lung infection, but I am also freaking out - wanting so badly to find some evidence of a cure out there - clinging to any hopes of my son still being able to have a wonderful life.

Please - anyone that can take some time to give me some really positive news... I would appreciate it so much.

 

[billsmom]

I would love for anyone to give me some positive feedback, please.

My son is 22 mos. old. From birth, he was a normal, fat, healthy baby. He always pooped a lot, but that was all we noticed "odd" about him.

He got a cold in early Jan. It wouldn't get better. It was just a clear runny nose and cough. I didn't take him to the doc at first cause I thought just common cold. When the fever came back, I took him in. Over the next few weeks, he tested neg. to a bunch of virus' (flu, RSV), and doc put him on antibiotic (amox). His breathing still was labored, and chest xray showed some "interstitial pneumonitis". Doctor was totally baffled and ended up admitting him with pretty bad dehydration and retracting.

He was in the hospital for four days. He perked up, got much better, and was released. But the pediatrician still wanted him to follow up with Hopkins Pulmonary Peds specialists... after asking me a ton of questions, the specialist sent him for a sweat test last Monday. She told us he did not present like most CF patients, so he prob just had asthma and allergies, but we would need to rule it out.

Here I am one week later, positively in shock and devastated to learn that my son has this disease, and he also has Pa (the bacteria). That fact scares me - A LOT.

My son has already had two appts at Hopkins CF clinic. They say his xrays look GOOD, and they think there is a better than 50% chance of killing the Pa. He has gained a pound in five days after starting enzyme treatments.

His will start two straight 28 day rounds of TOBI, beginning tonight (I am waiting for it to be delivered to my pharmacy). In addition, he takes Albuterol and Flovent with an inhaler and spacer. He takes singulair granuals once a day, enzymes with all food, multi vitamin.

This Pa thing scares me - that he is only 22 mos. old and already has it... I am very thankful that we found out with his first lung infection, but I am also freaking out - wanting so badly to find some evidence of a cure out there - clinging to any hopes of my son still being able to have a wonderful life.

Please - anyone that can take some time to give me some really positive news... I would appreciate it so much.

 

[billsmom]

I would love for anyone to give me some positive feedback, please.

My son is 22 mos. old. From birth, he was a normal, fat, healthy baby. He always pooped a lot, but that was all we noticed "odd" about him.

He got a cold in early Jan. It wouldn't get better. It was just a clear runny nose and cough. I didn't take him to the doc at first cause I thought just common cold. When the fever came back, I took him in. Over the next few weeks, he tested neg. to a bunch of virus' (flu, RSV), and doc put him on antibiotic (amox). His breathing still was labored, and chest xray showed some "interstitial pneumonitis". Doctor was totally baffled and ended up admitting him with pretty bad dehydration and retracting.

He was in the hospital for four days. He perked up, got much better, and was released. But the pediatrician still wanted him to follow up with Hopkins Pulmonary Peds specialists... after asking me a ton of questions, the specialist sent him for a sweat test last Monday. She told us he did not present like most CF patients, so he prob just had asthma and allergies, but we would need to rule it out.

Here I am one week later, positively in shock and devastated to learn that my son has this disease, and he also has Pa (the bacteria). That fact scares me - A LOT.

My son has already had two appts at Hopkins CF clinic. They say his xrays look GOOD, and they think there is a better than 50% chance of killing the Pa. He has gained a pound in five days after starting enzyme treatments.

His will start two straight 28 day rounds of TOBI, beginning tonight (I am waiting for it to be delivered to my pharmacy). In addition, he takes Albuterol and Flovent with an inhaler and spacer. He takes singulair granuals once a day, enzymes with all food, multi vitamin.

This Pa thing scares me - that he is only 22 mos. old and already has it... I am very thankful that we found out with his first lung infection, but I am also freaking out - wanting so badly to find some evidence of a cure out there - clinging to any hopes of my son still being able to have a wonderful life.

Please - anyone that can take some time to give me some really positive news... I would appreciate it so much.

 

[billsmom]

I would love for anyone to give me some positive feedback, please.
<br />
<br />My son is 22 mos. old. From birth, he was a normal, fat, healthy baby. He always pooped a lot, but that was all we noticed "odd" about him.
<br />
<br />He got a cold in early Jan. It wouldn't get better. It was just a clear runny nose and cough. I didn't take him to the doc at first cause I thought just common cold. When the fever came back, I took him in. Over the next few weeks, he tested neg. to a bunch of virus' (flu, RSV), and doc put him on antibiotic (amox). His breathing still was labored, and chest xray showed some "interstitial pneumonitis". Doctor was totally baffled and ended up admitting him with pretty bad dehydration and retracting.
<br />
<br />He was in the hospital for four days. He perked up, got much better, and was released. But the pediatrician still wanted him to follow up with Hopkins Pulmonary Peds specialists... after asking me a ton of questions, the specialist sent him for a sweat test last Monday. She told us he did not present like most CF patients, so he prob just had asthma and allergies, but we would need to rule it out.
<br />
<br />Here I am one week later, positively in shock and devastated to learn that my son has this disease, and he also has Pa (the bacteria). That fact scares me - A LOT.
<br />
<br />My son has already had two appts at Hopkins CF clinic. They say his xrays look GOOD, and they think there is a better than 50% chance of killing the Pa. He has gained a pound in five days after starting enzyme treatments.
<br />
<br />His will start two straight 28 day rounds of TOBI, beginning tonight (I am waiting for it to be delivered to my pharmacy). In addition, he takes Albuterol and Flovent with an inhaler and spacer. He takes singulair granuals once a day, enzymes with all food, multi vitamin.
<br />
<br />This Pa thing scares me - that he is only 22 mos. old and already has it... I am very thankful that we found out with his first lung infection, but I am also freaking out - wanting so badly to find some evidence of a cure out there - clinging to any hopes of my son still being able to have a wonderful life.
<br />
<br />Please - anyone that can take some time to give me some really positive news... I would appreciate it so much.

 

[Rebjane]

Welcome to this website. I am sorry for your son's diagnosis of CF BUT now that he is getting the CF treatment he needs you will find his health will improve. THe enzymes will help him gain weight, you will do chest pt and nebs to prevent further infections. THe fact that his x-rays look good and he is gaining weight is wonderful! My daughter is over 5 years old and has CF. She has had a bumpy road; but there truly is reason for hope. The Cystic Fibrosis Foundation at www.cff.org is a reliable source for info on CF(sounds like you are in good hands already) There is so much research going on for CF'ers; things that were just not available years ago. Our family has found that getting involved with the Cystic Fibrosis Foundation is a great way to get some control of this disease, as well as the daily preventative care we do for our daughter. In fact, my husband is a scientist and recently got a grant to do a pilot study for research from the CFF. Continue to ask questions, write the down. You will become your son's best advocate. Come to this site; people just "get it" here.

Check out my daughter's fundraising video on the link for Maggie's Marchers. You will see what a fun life she truly has!

 

[Rebjane]

Welcome to this website. I am sorry for your son's diagnosis of CF BUT now that he is getting the CF treatment he needs you will find his health will improve. THe enzymes will help him gain weight, you will do chest pt and nebs to prevent further infections. THe fact that his x-rays look good and he is gaining weight is wonderful! My daughter is over 5 years old and has CF. She has had a bumpy road; but there truly is reason for hope. The Cystic Fibrosis Foundation at www.cff.org is a reliable source for info on CF(sounds like you are in good hands already) There is so much research going on for CF'ers; things that were just not available years ago. Our family has found that getting involved with the Cystic Fibrosis Foundation is a great way to get some control of this disease, as well as the daily preventative care we do for our daughter. In fact, my husband is a scientist and recently got a grant to do a pilot study for research from the CFF. Continue to ask questions, write the down. You will become your son's best advocate. Come to this site; people just "get it" here.

Check out my daughter's fundraising video on the link for Maggie's Marchers. You will see what a fun life she truly has!

 

[Rebjane]

Welcome to this website. I am sorry for your son's diagnosis of CF BUT now that he is getting the CF treatment he needs you will find his health will improve. THe enzymes will help him gain weight, you will do chest pt and nebs to prevent further infections. THe fact that his x-rays look good and he is gaining weight is wonderful! My daughter is over 5 years old and has CF. She has had a bumpy road; but there truly is reason for hope. The Cystic Fibrosis Foundation at www.cff.org is a reliable source for info on CF(sounds like you are in good hands already) There is so much research going on for CF'ers; things that were just not available years ago. Our family has found that getting involved with the Cystic Fibrosis Foundation is a great way to get some control of this disease, as well as the daily preventative care we do for our daughter. In fact, my husband is a scientist and recently got a grant to do a pilot study for research from the CFF. Continue to ask questions, write the down. You will become your son's best advocate. Come to this site; people just "get it" here.

Check out my daughter's fundraising video on the link for Maggie's Marchers. You will see what a fun life she truly has!

 

[Rebjane]

Welcome to this website. I am sorry for your son's diagnosis of CF BUT now that he is getting the CF treatment he needs you will find his health will improve. THe enzymes will help him gain weight, you will do chest pt and nebs to prevent further infections. THe fact that his x-rays look good and he is gaining weight is wonderful! My daughter is over 5 years old and has CF. She has had a bumpy road; but there truly is reason for hope. The Cystic Fibrosis Foundation at www.cff.org is a reliable source for info on CF(sounds like you are in good hands already) There is so much research going on for CF'ers; things that were just not available years ago. Our family has found that getting involved with the Cystic Fibrosis Foundation is a great way to get some control of this disease, as well as the daily preventative care we do for our daughter. In fact, my husband is a scientist and recently got a grant to do a pilot study for research from the CFF. Continue to ask questions, write the down. You will become your son's best advocate. Come to this site; people just "get it" here.

Check out my daughter's fundraising video on the link for Maggie's Marchers. You will see what a fun life she truly has!

 

[Rebjane]

Welcome to this website. I am sorry for your son's diagnosis of CF BUT now that he is getting the CF treatment he needs you will find his health will improve. THe enzymes will help him gain weight, you will do chest pt and nebs to prevent further infections. THe fact that his x-rays look good and he is gaining weight is wonderful! My daughter is over 5 years old and has CF. She has had a bumpy road; but there truly is reason for hope. The Cystic Fibrosis Foundation at www.cff.org is a reliable source for info on CF(sounds like you are in good hands already) There is so much research going on for CF'ers; things that were just not available years ago. Our family has found that getting involved with the Cystic Fibrosis Foundation is a great way to get some control of this disease, as well as the daily preventative care we do for our daughter. In fact, my husband is a scientist and recently got a grant to do a pilot study for research from the CFF. Continue to ask questions, write the down. You will become your son's best advocate. Come to this site; people just "get it" here.

Check out my daughter's fundraising video on the link for Maggie's Marchers. You will see what a fun life she truly has!

 

[ktsmom]

Our daughter was diagnosed at age 3 years and 3 months due to digestive issues. She cultured PA at her first CF clinic visit. They treated with 3 straight rounds of TOBI and also Cipro (oral antibiotic). She has had all clear cultures since! We still do TOBI 28 on and 28 off. No more oral abx, though, except zithro 3 days a week for inflamation.

Sounds like you've got great care for your son - yay for that. Many providers take a "scorched earth" policy towards the first culture of PA to keep it from going mucoid for as long as possible. Also, I'm sure you know pseudomonas is <i>everywhere</i>. <img src="i/expressions/face-icon-small-frown.gif" border="0">

Welcome to the boards, try to breathe a little, and please enjoy your son!

 

[ktsmom]

Our daughter was diagnosed at age 3 years and 3 months due to digestive issues. She cultured PA at her first CF clinic visit. They treated with 3 straight rounds of TOBI and also Cipro (oral antibiotic). She has had all clear cultures since! We still do TOBI 28 on and 28 off. No more oral abx, though, except zithro 3 days a week for inflamation.

Sounds like you've got great care for your son - yay for that. Many providers take a "scorched earth" policy towards the first culture of PA to keep it from going mucoid for as long as possible. Also, I'm sure you know pseudomonas is <i>everywhere</i>. <img src="i/expressions/face-icon-small-frown.gif" border="0">

Welcome to the boards, try to breathe a little, and please enjoy your son!

 

[ktsmom]

Our daughter was diagnosed at age 3 years and 3 months due to digestive issues. She cultured PA at her first CF clinic visit. They treated with 3 straight rounds of TOBI and also Cipro (oral antibiotic). She has had all clear cultures since! We still do TOBI 28 on and 28 off. No more oral abx, though, except zithro 3 days a week for inflamation.

Sounds like you've got great care for your son - yay for that. Many providers take a "scorched earth" policy towards the first culture of PA to keep it from going mucoid for as long as possible. Also, I'm sure you know pseudomonas is <i>everywhere</i>. <img src="i/expressions/face-icon-small-frown.gif" border="0">

Welcome to the boards, try to breathe a little, and please enjoy your son!

 

[ktsmom]

Our daughter was diagnosed at age 3 years and 3 months due to digestive issues. She cultured PA at her first CF clinic visit. They treated with 3 straight rounds of TOBI and also Cipro (oral antibiotic). She has had all clear cultures since! We still do TOBI 28 on and 28 off. No more oral abx, though, except zithro 3 days a week for inflamation.

Sounds like you've got great care for your son - yay for that. Many providers take a "scorched earth" policy towards the first culture of PA to keep it from going mucoid for as long as possible. Also, I'm sure you know pseudomonas is <i>everywhere</i>. <img src="i/expressions/face-icon-small-frown.gif" border="0">

Welcome to the boards, try to breathe a little, and please enjoy your son!

 

[ktsmom]

Our daughter was diagnosed at age 3 years and 3 months due to digestive issues. She cultured PA at her first CF clinic visit. They treated with 3 straight rounds of TOBI and also Cipro (oral antibiotic). She has had all clear cultures since! We still do TOBI 28 on and 28 off. No more oral abx, though, except zithro 3 days a week for inflamation.
<br />
<br />Sounds like you've got great care for your son - yay for that. Many providers take a "scorched earth" policy towards the first culture of PA to keep it from going mucoid for as long as possible. Also, I'm sure you know pseudomonas is <i>everywhere</i>. <img src="i/expressions/face-icon-small-frown.gif" border="0">
<br />
<br />Welcome to the boards, try to breathe a little, and please enjoy your son!

 

[billsmom]

Thank you both. My life has changed already in the last week - considerably.

I am a "whatifer" and a researcher. I have already researched everything from meds to exercise to research... and beyond.

What I find lacking is information about what REALLY happens to these kids as time goes by... into adulthood. I am so petrified about my son's future... I know I need to enjoy him NOW, but I just want all the information I can possibly have in order to help him the best I can.

I want to prepare for all the worst, yet still hope and enjoy the best... if that makes sense. I don't want to be blindsided with anything.

 

[billsmom]

Thank you both. My life has changed already in the last week - considerably.

I am a "whatifer" and a researcher. I have already researched everything from meds to exercise to research... and beyond.

What I find lacking is information about what REALLY happens to these kids as time goes by... into adulthood. I am so petrified about my son's future... I know I need to enjoy him NOW, but I just want all the information I can possibly have in order to help him the best I can.

I want to prepare for all the worst, yet still hope and enjoy the best... if that makes sense. I don't want to be blindsided with anything.

 

[billsmom]

Thank you both. My life has changed already in the last week - considerably.

I am a "whatifer" and a researcher. I have already researched everything from meds to exercise to research... and beyond.

What I find lacking is information about what REALLY happens to these kids as time goes by... into adulthood. I am so petrified about my son's future... I know I need to enjoy him NOW, but I just want all the information I can possibly have in order to help him the best I can.

I want to prepare for all the worst, yet still hope and enjoy the best... if that makes sense. I don't want to be blindsided with anything.

 

[billsmom]

Thank you both. My life has changed already in the last week - considerably.

I am a "whatifer" and a researcher. I have already researched everything from meds to exercise to research... and beyond.

What I find lacking is information about what REALLY happens to these kids as time goes by... into adulthood. I am so petrified about my son's future... I know I need to enjoy him NOW, but I just want all the information I can possibly have in order to help him the best I can.

I want to prepare for all the worst, yet still hope and enjoy the best... if that makes sense. I don't want to be blindsided with anything.

 

[billsmom]

Thank you both. My life has changed already in the last week - considerably.
<br />
<br />I am a "whatifer" and a researcher. I have already researched everything from meds to exercise to research... and beyond.
<br />
<br />What I find lacking is information about what REALLY happens to these kids as time goes by... into adulthood. I am so petrified about my son's future... I know I need to enjoy him NOW, but I just want all the information I can possibly have in order to help him the best I can.
<br />
<br />I want to prepare for all the worst, yet still hope and enjoy the best... if that makes sense. I don't want to be blindsided with anything.