why is my son exhausted all the time?

[gr33nie]

Hello

I'm posting about my 2 yr. old son Eli here because I'd like to hear from you adults with CF that have 'been through it'.

Here are the pieces of the puzzle.

1. His lungs are doing great, no cough. He had a bronch in July which showed his lungs looking good and a negative culture. All of his cultures at his clinic appts. are negative. His weight and height are in the 80%.

2. He had a sinus CT that showed lots of 'stuff'. The ENT said it's hard to say exactly what that stuff is. He's getting his adenoids out at the end of the month and at that time will have a 'sinus' tap so that his sinus and be cultured directly.

Meanwhile, he obviously feels bad all the time. He has no energy and can't keep up with his friends. I take him out to fun places like indoor gyms and he runs around for a bit and then lays down on the mats. He's ready for his nap hours before all of the other kids are.

He is also a picky eater which gets extreme when he's not feeling well. He's pretty much surviving on a milk combination that I give him and things that 'normal' kids would gobble up in a second (cookies, chicken nuggets, pancakes) he won't put in his mouth or he will chew it and spit it out. This type of behavior seems to get worse when he's not doing well.

We just took blood to see if he was possibly anemic or had a thyroid problem. Everything came back normal except for slightly elevated liver enzymes.

I'm just wondering if any of you adults w/CF (or caregivers) have any thoughts about what might be going on with him? What's going on with you when you feel run down and crummy?

Thank you

Sarah

 

[gr33nie]

Hello

I'm posting about my 2 yr. old son Eli here because I'd like to hear from you adults with CF that have 'been through it'.

Here are the pieces of the puzzle.

1. His lungs are doing great, no cough. He had a bronch in July which showed his lungs looking good and a negative culture. All of his cultures at his clinic appts. are negative. His weight and height are in the 80%.

2. He had a sinus CT that showed lots of 'stuff'. The ENT said it's hard to say exactly what that stuff is. He's getting his adenoids out at the end of the month and at that time will have a 'sinus' tap so that his sinus and be cultured directly.

Meanwhile, he obviously feels bad all the time. He has no energy and can't keep up with his friends. I take him out to fun places like indoor gyms and he runs around for a bit and then lays down on the mats. He's ready for his nap hours before all of the other kids are.

He is also a picky eater which gets extreme when he's not feeling well. He's pretty much surviving on a milk combination that I give him and things that 'normal' kids would gobble up in a second (cookies, chicken nuggets, pancakes) he won't put in his mouth or he will chew it and spit it out. This type of behavior seems to get worse when he's not doing well.

We just took blood to see if he was possibly anemic or had a thyroid problem. Everything came back normal except for slightly elevated liver enzymes.

I'm just wondering if any of you adults w/CF (or caregivers) have any thoughts about what might be going on with him? What's going on with you when you feel run down and crummy?

Thank you

Sarah

 

[gr33nie]

Hello

I'm posting about my 2 yr. old son Eli here because I'd like to hear from you adults with CF that have 'been through it'.

Here are the pieces of the puzzle.

1. His lungs are doing great, no cough. He had a bronch in July which showed his lungs looking good and a negative culture. All of his cultures at his clinic appts. are negative. His weight and height are in the 80%.

2. He had a sinus CT that showed lots of 'stuff'. The ENT said it's hard to say exactly what that stuff is. He's getting his adenoids out at the end of the month and at that time will have a 'sinus' tap so that his sinus and be cultured directly.

Meanwhile, he obviously feels bad all the time. He has no energy and can't keep up with his friends. I take him out to fun places like indoor gyms and he runs around for a bit and then lays down on the mats. He's ready for his nap hours before all of the other kids are.

He is also a picky eater which gets extreme when he's not feeling well. He's pretty much surviving on a milk combination that I give him and things that 'normal' kids would gobble up in a second (cookies, chicken nuggets, pancakes) he won't put in his mouth or he will chew it and spit it out. This type of behavior seems to get worse when he's not doing well.

We just took blood to see if he was possibly anemic or had a thyroid problem. Everything came back normal except for slightly elevated liver enzymes.

I'm just wondering if any of you adults w/CF (or caregivers) have any thoughts about what might be going on with him? What's going on with you when you feel run down and crummy?

Thank you

Sarah

 

[gr33nie]

Hello

I'm posting about my 2 yr. old son Eli here because I'd like to hear from you adults with CF that have 'been through it'.

Here are the pieces of the puzzle.

1. His lungs are doing great, no cough. He had a bronch in July which showed his lungs looking good and a negative culture. All of his cultures at his clinic appts. are negative. His weight and height are in the 80%.

2. He had a sinus CT that showed lots of 'stuff'. The ENT said it's hard to say exactly what that stuff is. He's getting his adenoids out at the end of the month and at that time will have a 'sinus' tap so that his sinus and be cultured directly.

Meanwhile, he obviously feels bad all the time. He has no energy and can't keep up with his friends. I take him out to fun places like indoor gyms and he runs around for a bit and then lays down on the mats. He's ready for his nap hours before all of the other kids are.

He is also a picky eater which gets extreme when he's not feeling well. He's pretty much surviving on a milk combination that I give him and things that 'normal' kids would gobble up in a second (cookies, chicken nuggets, pancakes) he won't put in his mouth or he will chew it and spit it out. This type of behavior seems to get worse when he's not doing well.

We just took blood to see if he was possibly anemic or had a thyroid problem. Everything came back normal except for slightly elevated liver enzymes.

I'm just wondering if any of you adults w/CF (or caregivers) have any thoughts about what might be going on with him? What's going on with you when you feel run down and crummy?

Thank you

Sarah

 

[gr33nie]

Hello

I'm posting about my 2 yr. old son Eli here because I'd like to hear from you adults with CF that have 'been through it'.

Here are the pieces of the puzzle.

1. His lungs are doing great, no cough. He had a bronch in July which showed his lungs looking good and a negative culture. All of his cultures at his clinic appts. are negative. His weight and height are in the 80%.

2. He had a sinus CT that showed lots of 'stuff'. The ENT said it's hard to say exactly what that stuff is. He's getting his adenoids out at the end of the month and at that time will have a 'sinus' tap so that his sinus and be cultured directly.

Meanwhile, he obviously feels bad all the time. He has no energy and can't keep up with his friends. I take him out to fun places like indoor gyms and he runs around for a bit and then lays down on the mats. He's ready for his nap hours before all of the other kids are.

He is also a picky eater which gets extreme when he's not feeling well. He's pretty much surviving on a milk combination that I give him and things that 'normal' kids would gobble up in a second (cookies, chicken nuggets, pancakes) he won't put in his mouth or he will chew it and spit it out. This type of behavior seems to get worse when he's not doing well.

We just took blood to see if he was possibly anemic or had a thyroid problem. Everything came back normal except for slightly elevated liver enzymes.

I'm just wondering if any of you adults w/CF (or caregivers) have any thoughts about what might be going on with him? What's going on with you when you feel run down and crummy?

Thank you

Sarah

 

[JazzysMom]

Do you know what his 02 saturation is? Even tho his lungs look good, his body might not be processing 02 well.

It could also very well be his diet. We need more energy then a typical person because our bodies are constantly burning energy just to breath. Forget coughing, running or any other activities.

Meds can run your energy level into the grounds as well as diabetes. He is a bit young to have CFRD, but you might want to mention it to the doctors. If nothing else maybe you can get a glucometer & test his sugars throughout the day.

His diet might reflect something with that. Its normal for ones appetite to go bye bye when not feeling well. Thanks why its such a vicious cycle for us.

His sinuses could have a big impact also. I wish it was a clear cut answer, but everyone is different & there is so many aspects of CF (meds, bacteria, lung function etc) that can cause this issue.

HUGS & dont worry that its each & everything I mentioned. I just through ideas out there that maybe you can rule out or pursue.

 

[JazzysMom]

Do you know what his 02 saturation is? Even tho his lungs look good, his body might not be processing 02 well.

It could also very well be his diet. We need more energy then a typical person because our bodies are constantly burning energy just to breath. Forget coughing, running or any other activities.

Meds can run your energy level into the grounds as well as diabetes. He is a bit young to have CFRD, but you might want to mention it to the doctors. If nothing else maybe you can get a glucometer & test his sugars throughout the day.

His diet might reflect something with that. Its normal for ones appetite to go bye bye when not feeling well. Thanks why its such a vicious cycle for us.

His sinuses could have a big impact also. I wish it was a clear cut answer, but everyone is different & there is so many aspects of CF (meds, bacteria, lung function etc) that can cause this issue.

HUGS & dont worry that its each & everything I mentioned. I just through ideas out there that maybe you can rule out or pursue.

 

[JazzysMom]

Do you know what his 02 saturation is? Even tho his lungs look good, his body might not be processing 02 well.

It could also very well be his diet. We need more energy then a typical person because our bodies are constantly burning energy just to breath. Forget coughing, running or any other activities.

Meds can run your energy level into the grounds as well as diabetes. He is a bit young to have CFRD, but you might want to mention it to the doctors. If nothing else maybe you can get a glucometer & test his sugars throughout the day.

His diet might reflect something with that. Its normal for ones appetite to go bye bye when not feeling well. Thanks why its such a vicious cycle for us.

His sinuses could have a big impact also. I wish it was a clear cut answer, but everyone is different & there is so many aspects of CF (meds, bacteria, lung function etc) that can cause this issue.

HUGS & dont worry that its each & everything I mentioned. I just through ideas out there that maybe you can rule out or pursue.

 

[JazzysMom]

Do you know what his 02 saturation is? Even tho his lungs look good, his body might not be processing 02 well.

It could also very well be his diet. We need more energy then a typical person because our bodies are constantly burning energy just to breath. Forget coughing, running or any other activities.

Meds can run your energy level into the grounds as well as diabetes. He is a bit young to have CFRD, but you might want to mention it to the doctors. If nothing else maybe you can get a glucometer & test his sugars throughout the day.

His diet might reflect something with that. Its normal for ones appetite to go bye bye when not feeling well. Thanks why its such a vicious cycle for us.

His sinuses could have a big impact also. I wish it was a clear cut answer, but everyone is different & there is so many aspects of CF (meds, bacteria, lung function etc) that can cause this issue.

HUGS & dont worry that its each & everything I mentioned. I just through ideas out there that maybe you can rule out or pursue.

 

[JazzysMom]

Do you know what his 02 saturation is? Even tho his lungs look good, his body might not be processing 02 well.

It could also very well be his diet. We need more energy then a typical person because our bodies are constantly burning energy just to breath. Forget coughing, running or any other activities.

Meds can run your energy level into the grounds as well as diabetes. He is a bit young to have CFRD, but you might want to mention it to the doctors. If nothing else maybe you can get a glucometer & test his sugars throughout the day.

His diet might reflect something with that. Its normal for ones appetite to go bye bye when not feeling well. Thanks why its such a vicious cycle for us.

His sinuses could have a big impact also. I wish it was a clear cut answer, but everyone is different & there is so many aspects of CF (meds, bacteria, lung function etc) that can cause this issue.

HUGS & dont worry that its each & everything I mentioned. I just through ideas out there that maybe you can rule out or pursue.

 

[Giggles]

For sure talk with doc. At first I thought infection in lungs cause when I am getting sick I get so tired. But you said he is not coughing. So maybe not that. Have you checked for Diabetes? You can feel run down from that? Also, lack of nutrition could make even a healthy person tired. Your body is like a car and a car needs fuel to run just like the body needs food. OR maybe he needs his enzymes checked because he is not absorbing enough from the foods and therefore not getting the nutrients he needs to sustain himself. Although, you did say his weight was okay. We always have infections in our bodies and our bodies are working much harder than healthy people's so maybe he is just worn out. I would talk with doctor about some suggestions you are getting. Check his o2 level while he is exercising. Have the doc put that thing on his finger while he walks up some stairs and see where the level goes.

Good luck!

Jennifer 35 years old with CF andCFRD

 

[Giggles]

For sure talk with doc. At first I thought infection in lungs cause when I am getting sick I get so tired. But you said he is not coughing. So maybe not that. Have you checked for Diabetes? You can feel run down from that? Also, lack of nutrition could make even a healthy person tired. Your body is like a car and a car needs fuel to run just like the body needs food. OR maybe he needs his enzymes checked because he is not absorbing enough from the foods and therefore not getting the nutrients he needs to sustain himself. Although, you did say his weight was okay. We always have infections in our bodies and our bodies are working much harder than healthy people's so maybe he is just worn out. I would talk with doctor about some suggestions you are getting. Check his o2 level while he is exercising. Have the doc put that thing on his finger while he walks up some stairs and see where the level goes.

Good luck!

Jennifer 35 years old with CF andCFRD

 

[Giggles]

For sure talk with doc. At first I thought infection in lungs cause when I am getting sick I get so tired. But you said he is not coughing. So maybe not that. Have you checked for Diabetes? You can feel run down from that? Also, lack of nutrition could make even a healthy person tired. Your body is like a car and a car needs fuel to run just like the body needs food. OR maybe he needs his enzymes checked because he is not absorbing enough from the foods and therefore not getting the nutrients he needs to sustain himself. Although, you did say his weight was okay. We always have infections in our bodies and our bodies are working much harder than healthy people's so maybe he is just worn out. I would talk with doctor about some suggestions you are getting. Check his o2 level while he is exercising. Have the doc put that thing on his finger while he walks up some stairs and see where the level goes.

Good luck!

Jennifer 35 years old with CF andCFRD

 

[Giggles]

For sure talk with doc. At first I thought infection in lungs cause when I am getting sick I get so tired. But you said he is not coughing. So maybe not that. Have you checked for Diabetes? You can feel run down from that? Also, lack of nutrition could make even a healthy person tired. Your body is like a car and a car needs fuel to run just like the body needs food. OR maybe he needs his enzymes checked because he is not absorbing enough from the foods and therefore not getting the nutrients he needs to sustain himself. Although, you did say his weight was okay. We always have infections in our bodies and our bodies are working much harder than healthy people's so maybe he is just worn out. I would talk with doctor about some suggestions you are getting. Check his o2 level while he is exercising. Have the doc put that thing on his finger while he walks up some stairs and see where the level goes.

Good luck!

Jennifer 35 years old with CF andCFRD

 

[Giggles]

For sure talk with doc. At first I thought infection in lungs cause when I am getting sick I get so tired. But you said he is not coughing. So maybe not that. Have you checked for Diabetes? You can feel run down from that? Also, lack of nutrition could make even a healthy person tired. Your body is like a car and a car needs fuel to run just like the body needs food. OR maybe he needs his enzymes checked because he is not absorbing enough from the foods and therefore not getting the nutrients he needs to sustain himself. Although, you did say his weight was okay. We always have infections in our bodies and our bodies are working much harder than healthy people's so maybe he is just worn out. I would talk with doctor about some suggestions you are getting. Check his o2 level while he is exercising. Have the doc put that thing on his finger while he walks up some stairs and see where the level goes.

Good luck!

Jennifer 35 years old with CF andCFRD

 

[JORDYSMOM]

The first thing I thought of was O2 and diet. My son isn't an adult, but he is 17, and some of the things you mentioned are things I've noticed about him over the years. Jordan has very severe sinus issues. He is tired a lot! He also has a problem eating a lot! He will put a bite in his mouth just like you said your son does, and then he will have to go spit it out or he will gag. This doesn't happen every time he eats, but often enough to make him just not try to eat a lot of the time. This gets his blood sugar off, and that causes shakiness and weakness.

I really feel that a lot of my son's issues are sinus related. He has so much drainage, and that really makes you lose your appetite and gag easily. Does your son breathe through his mouth a lot? Jordan always did, because of his sinuses, and they don't get the right amount of oxygen that way. Also, Jordan has an asthma component to his CF, so that definitely causes O2 problems. As Mel said, their bodies have to work twice as hard, so it takes twice as much energy.

I hope you find the answers you need for your baby boy. Keep us posted.

Stacey

 

[JORDYSMOM]

The first thing I thought of was O2 and diet. My son isn't an adult, but he is 17, and some of the things you mentioned are things I've noticed about him over the years. Jordan has very severe sinus issues. He is tired a lot! He also has a problem eating a lot! He will put a bite in his mouth just like you said your son does, and then he will have to go spit it out or he will gag. This doesn't happen every time he eats, but often enough to make him just not try to eat a lot of the time. This gets his blood sugar off, and that causes shakiness and weakness.

I really feel that a lot of my son's issues are sinus related. He has so much drainage, and that really makes you lose your appetite and gag easily. Does your son breathe through his mouth a lot? Jordan always did, because of his sinuses, and they don't get the right amount of oxygen that way. Also, Jordan has an asthma component to his CF, so that definitely causes O2 problems. As Mel said, their bodies have to work twice as hard, so it takes twice as much energy.

I hope you find the answers you need for your baby boy. Keep us posted.

Stacey

 

[JORDYSMOM]

The first thing I thought of was O2 and diet. My son isn't an adult, but he is 17, and some of the things you mentioned are things I've noticed about him over the years. Jordan has very severe sinus issues. He is tired a lot! He also has a problem eating a lot! He will put a bite in his mouth just like you said your son does, and then he will have to go spit it out or he will gag. This doesn't happen every time he eats, but often enough to make him just not try to eat a lot of the time. This gets his blood sugar off, and that causes shakiness and weakness.

I really feel that a lot of my son's issues are sinus related. He has so much drainage, and that really makes you lose your appetite and gag easily. Does your son breathe through his mouth a lot? Jordan always did, because of his sinuses, and they don't get the right amount of oxygen that way. Also, Jordan has an asthma component to his CF, so that definitely causes O2 problems. As Mel said, their bodies have to work twice as hard, so it takes twice as much energy.

I hope you find the answers you need for your baby boy. Keep us posted.

Stacey

 

[JORDYSMOM]

The first thing I thought of was O2 and diet. My son isn't an adult, but he is 17, and some of the things you mentioned are things I've noticed about him over the years. Jordan has very severe sinus issues. He is tired a lot! He also has a problem eating a lot! He will put a bite in his mouth just like you said your son does, and then he will have to go spit it out or he will gag. This doesn't happen every time he eats, but often enough to make him just not try to eat a lot of the time. This gets his blood sugar off, and that causes shakiness and weakness.

I really feel that a lot of my son's issues are sinus related. He has so much drainage, and that really makes you lose your appetite and gag easily. Does your son breathe through his mouth a lot? Jordan always did, because of his sinuses, and they don't get the right amount of oxygen that way. Also, Jordan has an asthma component to his CF, so that definitely causes O2 problems. As Mel said, their bodies have to work twice as hard, so it takes twice as much energy.

I hope you find the answers you need for your baby boy. Keep us posted.

Stacey

 

[JORDYSMOM]

The first thing I thought of was O2 and diet. My son isn't an adult, but he is 17, and some of the things you mentioned are things I've noticed about him over the years. Jordan has very severe sinus issues. He is tired a lot! He also has a problem eating a lot! He will put a bite in his mouth just like you said your son does, and then he will have to go spit it out or he will gag. This doesn't happen every time he eats, but often enough to make him just not try to eat a lot of the time. This gets his blood sugar off, and that causes shakiness and weakness.

I really feel that a lot of my son's issues are sinus related. He has so much drainage, and that really makes you lose your appetite and gag easily. Does your son breathe through his mouth a lot? Jordan always did, because of his sinuses, and they don't get the right amount of oxygen that way. Also, Jordan has an asthma component to his CF, so that definitely causes O2 problems. As Mel said, their bodies have to work twice as hard, so it takes twice as much energy.

I hope you find the answers you need for your baby boy. Keep us posted.

Stacey