thought he had celiacs, found out he had CF

B

brematt

New member
By October I had had enough of people telling me, ever-so-politely, that I was over-reacting about my son's health. He had been getting sicker over the last year and hadn't gained any weight. His stomach ache's were getting worse and he kept testing positive in throat cultures for Staph A and H flu. I knew there was something more to the throat cultures, and asked several Dr.'s. All I got was, "those bacteria are normal". So why were they making him sick? I started researching chronic diarrhea (something I knew he definately had) and came across Celiac's disease and IBD. I pushed for testing at his 11 year well child. We started with anti-body tests... which led to a 3 hour trip to a pediatric GI specialist... which led to more tests. 2 months later, a preliminary diagnosis of Crohn's was changed to CF. We were blindsided! It was definately a lesson in trusting your gut and being pushy with Dr.'s.
Our first CF clinic appt was last week. It was so nice to meet with a staff that didn't treat me like I was crazy.
My poor son is lost. One minute he was playing football and the next he's taking 16 pills a day and doing breathing treatments. He's felt like he does now his whole life so he has no concept that it's not "normal". He just eventually learned to cope with the chest pressure and stomach pain. I got him set up on this website with his own user name so that's helped. He's waiting for me to fininsh so he can check his post (lol). It will be nice for him to have othe young people with cf to ask questions and to talk to.
?: We get his sputum test results tomorrow. I know it's + for staph a, will know the rest Friday. What does that mean? Will he need to go on antibiotics or is it just to know what is in his lungs? How do I talk to his reg. pediatrician about treating colds? The CF clinic says treat colds, my community says don't treat colds. The CF clinic is 3 hours away. Thanks!
Shannon
 
B

brematt

New member
By October I had had enough of people telling me, ever-so-politely, that I was over-reacting about my son's health. He had been getting sicker over the last year and hadn't gained any weight. His stomach ache's were getting worse and he kept testing positive in throat cultures for Staph A and H flu. I knew there was something more to the throat cultures, and asked several Dr.'s. All I got was, "those bacteria are normal". So why were they making him sick? I started researching chronic diarrhea (something I knew he definately had) and came across Celiac's disease and IBD. I pushed for testing at his 11 year well child. We started with anti-body tests... which led to a 3 hour trip to a pediatric GI specialist... which led to more tests. 2 months later, a preliminary diagnosis of Crohn's was changed to CF. We were blindsided! It was definately a lesson in trusting your gut and being pushy with Dr.'s.
Our first CF clinic appt was last week. It was so nice to meet with a staff that didn't treat me like I was crazy.
My poor son is lost. One minute he was playing football and the next he's taking 16 pills a day and doing breathing treatments. He's felt like he does now his whole life so he has no concept that it's not "normal". He just eventually learned to cope with the chest pressure and stomach pain. I got him set up on this website with his own user name so that's helped. He's waiting for me to fininsh so he can check his post (lol). It will be nice for him to have othe young people with cf to ask questions and to talk to.
?: We get his sputum test results tomorrow. I know it's + for staph a, will know the rest Friday. What does that mean? Will he need to go on antibiotics or is it just to know what is in his lungs? How do I talk to his reg. pediatrician about treating colds? The CF clinic says treat colds, my community says don't treat colds. The CF clinic is 3 hours away. Thanks!
Shannon
 
B

brematt

New member
By October I had had enough of people telling me, ever-so-politely, that I was over-reacting about my son's health. He had been getting sicker over the last year and hadn't gained any weight. His stomach ache's were getting worse and he kept testing positive in throat cultures for Staph A and H flu. I knew there was something more to the throat cultures, and asked several Dr.'s. All I got was, "those bacteria are normal". So why were they making him sick? I started researching chronic diarrhea (something I knew he definately had) and came across Celiac's disease and IBD. I pushed for testing at his 11 year well child. We started with anti-body tests... which led to a 3 hour trip to a pediatric GI specialist... which led to more tests. 2 months later, a preliminary diagnosis of Crohn's was changed to CF. We were blindsided! It was definately a lesson in trusting your gut and being pushy with Dr.'s.
Our first CF clinic appt was last week. It was so nice to meet with a staff that didn't treat me like I was crazy.
My poor son is lost. One minute he was playing football and the next he's taking 16 pills a day and doing breathing treatments. He's felt like he does now his whole life so he has no concept that it's not "normal". He just eventually learned to cope with the chest pressure and stomach pain. I got him set up on this website with his own user name so that's helped. He's waiting for me to fininsh so he can check his post (lol). It will be nice for him to have othe young people with cf to ask questions and to talk to.
?: We get his sputum test results tomorrow. I know it's + for staph a, will know the rest Friday. What does that mean? Will he need to go on antibiotics or is it just to know what is in his lungs? How do I talk to his reg. pediatrician about treating colds? The CF clinic says treat colds, my community says don't treat colds. The CF clinic is 3 hours away. Thanks!
Shannon
 
A

Alyssa

New member
Hello and welcome to the site! Sorry to hear your son was diagnosed with CF -- good for you though-- now he can get the care and treatment he needs. Like they told me at our first appointment "as bad as it is to get the diagnosis, we are pretty confident she will start feeling better now that we know how to treat her problems"

They were right, she is healthier now than before.

I noticed you typed "Breanna 10/04?06 no CF? --- yes, you should get your daughter tested (read my blod if you have time, link is below)

My daughter wasn't diagnosed until she was 14 years old, she may be able to relate to some of what your son is going through, just starting with everything at 11 years old. If you are interested let me know they can either PM over this sight or exchange email addresses.
 
A

Alyssa

New member
Hello and welcome to the site! Sorry to hear your son was diagnosed with CF -- good for you though-- now he can get the care and treatment he needs. Like they told me at our first appointment "as bad as it is to get the diagnosis, we are pretty confident she will start feeling better now that we know how to treat her problems"

They were right, she is healthier now than before.

I noticed you typed "Breanna 10/04?06 no CF? --- yes, you should get your daughter tested (read my blod if you have time, link is below)

My daughter wasn't diagnosed until she was 14 years old, she may be able to relate to some of what your son is going through, just starting with everything at 11 years old. If you are interested let me know they can either PM over this sight or exchange email addresses.
 
A

Alyssa

New member
Hello and welcome to the site! Sorry to hear your son was diagnosed with CF -- good for you though-- now he can get the care and treatment he needs. Like they told me at our first appointment "as bad as it is to get the diagnosis, we are pretty confident she will start feeling better now that we know how to treat her problems"

They were right, she is healthier now than before.

I noticed you typed "Breanna 10/04?06 no CF? --- yes, you should get your daughter tested (read my blod if you have time, link is below)

My daughter wasn't diagnosed until she was 14 years old, she may be able to relate to some of what your son is going through, just starting with everything at 11 years old. If you are interested let me know they can either PM over this sight or exchange email addresses.
 
R

Rebjane

Super Moderator
Hi there,

Sounds like you have been through alot. I'm sorry about your son's CF diagnosis but now as you said you will see a CF team and address your son's health issues as a whole. Getting other children tested for Cf is important as well as the other poster stated.It's alot for your son to adjust to; enzymes, breathing treatments, chest PT. However, his body may start to feel better with these treatments, he should gain weight and grow and have less tummy aches.The CF doctor should treat you as a team including your regular pediatrician in with the health plan for your son. Of course , doctors have differing opionions on things which can make things complicated. As the tests for your son come back, the CF team should make a health care regime that works for your son. Make sure you request copies of your son's medical info, our regular ped suggested this. Keep a file of all labs, sputum cultuers, x-rays history and physicals. You will be the one(at times) telling the doctor what your son needs. You will be part of the health care team.

What we do when our daughter has a cold is: increase VEST therapy, extra nebs, extra fluids, Saline Nasal spray(toclean the boogers out), warm baths or showers(again to clear the boogers out) We call our CF doc when she is coughing at night, fever, increase cough during the day, or just doesn't seem right. Also, if she has difficulty breathing, wheezing. get to know your son's cough. Our daughter's cough has a certain sound that I know she needs her antibiotics for.

I hope this isn't too much information as I'm sure you will be bombarded with info. Remember not all info on CF is up to date.(even doctors have outdated info on CF) Relible inforamtion an be found at www.cff.org. This is the Cystic Fibrosis Foundation's website.

HTH
 
R

Rebjane

Super Moderator
Hi there,

Sounds like you have been through alot. I'm sorry about your son's CF diagnosis but now as you said you will see a CF team and address your son's health issues as a whole. Getting other children tested for Cf is important as well as the other poster stated.It's alot for your son to adjust to; enzymes, breathing treatments, chest PT. However, his body may start to feel better with these treatments, he should gain weight and grow and have less tummy aches.The CF doctor should treat you as a team including your regular pediatrician in with the health plan for your son. Of course , doctors have differing opionions on things which can make things complicated. As the tests for your son come back, the CF team should make a health care regime that works for your son. Make sure you request copies of your son's medical info, our regular ped suggested this. Keep a file of all labs, sputum cultuers, x-rays history and physicals. You will be the one(at times) telling the doctor what your son needs. You will be part of the health care team.

What we do when our daughter has a cold is: increase VEST therapy, extra nebs, extra fluids, Saline Nasal spray(toclean the boogers out), warm baths or showers(again to clear the boogers out) We call our CF doc when she is coughing at night, fever, increase cough during the day, or just doesn't seem right. Also, if she has difficulty breathing, wheezing. get to know your son's cough. Our daughter's cough has a certain sound that I know she needs her antibiotics for.

I hope this isn't too much information as I'm sure you will be bombarded with info. Remember not all info on CF is up to date.(even doctors have outdated info on CF) Relible inforamtion an be found at www.cff.org. This is the Cystic Fibrosis Foundation's website.

HTH
 
R

Rebjane

Super Moderator
Hi there,

Sounds like you have been through alot. I'm sorry about your son's CF diagnosis but now as you said you will see a CF team and address your son's health issues as a whole. Getting other children tested for Cf is important as well as the other poster stated.It's alot for your son to adjust to; enzymes, breathing treatments, chest PT. However, his body may start to feel better with these treatments, he should gain weight and grow and have less tummy aches.The CF doctor should treat you as a team including your regular pediatrician in with the health plan for your son. Of course , doctors have differing opionions on things which can make things complicated. As the tests for your son come back, the CF team should make a health care regime that works for your son. Make sure you request copies of your son's medical info, our regular ped suggested this. Keep a file of all labs, sputum cultuers, x-rays history and physicals. You will be the one(at times) telling the doctor what your son needs. You will be part of the health care team.

What we do when our daughter has a cold is: increase VEST therapy, extra nebs, extra fluids, Saline Nasal spray(toclean the boogers out), warm baths or showers(again to clear the boogers out) We call our CF doc when she is coughing at night, fever, increase cough during the day, or just doesn't seem right. Also, if she has difficulty breathing, wheezing. get to know your son's cough. Our daughter's cough has a certain sound that I know she needs her antibiotics for.

I hope this isn't too much information as I'm sure you will be bombarded with info. Remember not all info on CF is up to date.(even doctors have outdated info on CF) Relible inforamtion an be found at www.cff.org. This is the Cystic Fibrosis Foundation's website.

HTH
 
R

Rebjane

Super Moderator
I forgot to add; exercize is a wonderful thing for CF'ers. check with your CF doctor but our encourages exersize and physical activity, it keeps the lungs and heart healthy.
 
R

Rebjane

Super Moderator
I forgot to add; exercize is a wonderful thing for CF'ers. check with your CF doctor but our encourages exersize and physical activity, it keeps the lungs and heart healthy.
 
R

Rebjane

Super Moderator
I forgot to add; exercize is a wonderful thing for CF'ers. check with your CF doctor but our encourages exersize and physical activity, it keeps the lungs and heart healthy.
 
T

tammykrumrey

Guest
Welcome to this community of great people with a wealth of knowledge. I am sorry that your son is having such a tough time. I would suspect that it would be very difficult getting a dx of this at 11 years old.

I agree about having your daughter tested to just rule it out.

Regarding the staph that yor son cultures...both of my girls culture staph as well as MRSA, and have for years. But it is only treated when it causes issues, such as decreased PFTs and/or increase in cough. Normally it just 'sits' there, not causing a lot of issues, but sometimes it can get out of control and it needs an antibiotic to knock it back down. I think there are different opinions regarding how much damage staph does to the lungs. My older daughter who normally cultures only MRSA and sometimes staph had moderate lung damage in one of her lobes. Yet, my younger daughter who cultures the same thing, as well as recently culturing Psuedomonas, has no lung damage at all-they are beautiful little lungs<img src="i/expressions/face-icon-small-smile.gif" border="0"> Both girls have PFTs in the mid 90s on average.

And as far as treating colds...normally we do because the colds can 'go into the chest' and cause more problems for someone with CF. When my girls start coughing more and just start looking more wore out, I call our CF clinic and they typically start them on an antibiotic.

I hope that helps with some of your questions. Your son needs to realize that he can still do all the things he wants, including playing football! He just needs to spend a little more time taking care of himself so that he can stay healthy enough to do those things that he loves to do<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
Welcome to this community of great people with a wealth of knowledge. I am sorry that your son is having such a tough time. I would suspect that it would be very difficult getting a dx of this at 11 years old.

I agree about having your daughter tested to just rule it out.

Regarding the staph that yor son cultures...both of my girls culture staph as well as MRSA, and have for years. But it is only treated when it causes issues, such as decreased PFTs and/or increase in cough. Normally it just 'sits' there, not causing a lot of issues, but sometimes it can get out of control and it needs an antibiotic to knock it back down. I think there are different opinions regarding how much damage staph does to the lungs. My older daughter who normally cultures only MRSA and sometimes staph had moderate lung damage in one of her lobes. Yet, my younger daughter who cultures the same thing, as well as recently culturing Psuedomonas, has no lung damage at all-they are beautiful little lungs<img src="i/expressions/face-icon-small-smile.gif" border="0"> Both girls have PFTs in the mid 90s on average.

And as far as treating colds...normally we do because the colds can 'go into the chest' and cause more problems for someone with CF. When my girls start coughing more and just start looking more wore out, I call our CF clinic and they typically start them on an antibiotic.

I hope that helps with some of your questions. Your son needs to realize that he can still do all the things he wants, including playing football! He just needs to spend a little more time taking care of himself so that he can stay healthy enough to do those things that he loves to do<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
Welcome to this community of great people with a wealth of knowledge. I am sorry that your son is having such a tough time. I would suspect that it would be very difficult getting a dx of this at 11 years old.

I agree about having your daughter tested to just rule it out.

Regarding the staph that yor son cultures...both of my girls culture staph as well as MRSA, and have for years. But it is only treated when it causes issues, such as decreased PFTs and/or increase in cough. Normally it just 'sits' there, not causing a lot of issues, but sometimes it can get out of control and it needs an antibiotic to knock it back down. I think there are different opinions regarding how much damage staph does to the lungs. My older daughter who normally cultures only MRSA and sometimes staph had moderate lung damage in one of her lobes. Yet, my younger daughter who cultures the same thing, as well as recently culturing Psuedomonas, has no lung damage at all-they are beautiful little lungs<img src="i/expressions/face-icon-small-smile.gif" border="0"> Both girls have PFTs in the mid 90s on average.

And as far as treating colds...normally we do because the colds can 'go into the chest' and cause more problems for someone with CF. When my girls start coughing more and just start looking more wore out, I call our CF clinic and they typically start them on an antibiotic.

I hope that helps with some of your questions. Your son needs to realize that he can still do all the things he wants, including playing football! He just needs to spend a little more time taking care of himself so that he can stay healthy enough to do those things that he loves to do<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

cheerfull

New member
Hello Im new to doing this kind of thing but I think support from outhers is a great thing!
My baby girl has cf she is now 11 months old and so far so good . she was dignoised while I was preg. what scares me is you guys have talking about the doc thinking it was celics, well I have a son who has been getting really sick for about a year now and the doc said he was sure its celic but now Im afride maybe I need to get him tested. I was tested when I was preg. with him but maybe that wasnt accurate! Life is crazy right now and im scard, seems as tho no one understands what im going though. Not to mention learning to get the creon dose right!
 
C

cheerfull

New member
Hello Im new to doing this kind of thing but I think support from outhers is a great thing!
My baby girl has cf she is now 11 months old and so far so good . she was dignoised while I was preg. what scares me is you guys have talking about the doc thinking it was celics, well I have a son who has been getting really sick for about a year now and the doc said he was sure its celic but now Im afride maybe I need to get him tested. I was tested when I was preg. with him but maybe that wasnt accurate! Life is crazy right now and im scard, seems as tho no one understands what im going though. Not to mention learning to get the creon dose right!
 
C

cheerfull

New member
Hello Im new to doing this kind of thing but I think support from outhers is a great thing!
My baby girl has cf she is now 11 months old and so far so good . she was dignoised while I was preg. what scares me is you guys have talking about the doc thinking it was celics, well I have a son who has been getting really sick for about a year now and the doc said he was sure its celic but now Im afride maybe I need to get him tested. I was tested when I was preg. with him but maybe that wasnt accurate! Life is crazy right now and im scard, seems as tho no one understands what im going though. Not to mention learning to get the creon dose right!
 
C

cheerfull

New member
Can anyone one tell me if it is normal for a babgirl to have a desended tummy? The doc wasnt so sure or at least thats the way he made me feel!
 
C

cheerfull

New member
Can anyone one tell me if it is normal for a babgirl to have a desended tummy? The doc wasnt so sure or at least thats the way he made me feel!
 
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