Need some help or advice!

[holmfamily1992]

Hey everyone!!

This time its not Dylan....thats a first. Its my daughter Stephanie, 15 with CF. I have made the appropriate phone calls and they have increased her rescue meds and PT to 4 times a day.

I know that CF can go from one extreme to the next and that is what is going on with Steph I think. She has always been sick here and there through out her entire life but nothing major and no hospitalizations. She was diagnosed in August and started the standard CF meds. She begun to get "sick" last week and is steadly getting worse. I took her to her primary yesterday to make sure it wasnt Mono. Negative. No strep either. She really doesnt have a sore throat but just feels like crap. Her doc said the back of her throat was a mucas highway but her lungs sounded clear. When she got up yesterday morning she coughed at least 25 times in 15 minutes. That is why her doctor increased her meds and PT. She is still coughing just not as much as she was and she says her lungs feel ok. She is sleeping an aweful lot since Sunday. (pretty much all day) She has no energy and isnt eating very much. She doesnt have any nutrional worries so thats not a concern right now. Its just abnormal for her.

Is this just CF?? I know everyone is different when it comes to this disease but its just not normal for her. We have to set up a 504 plan with the school because she is missing way to much.

She see's her CF doctor next week so hopefully she doesnt get worse.

So these are her symptoms:
Cough
runny nose
no energy
sleep all the time
sometimes a headache
sometimes a stomach ache.

Sounds like the flu....I just dont know.

Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">

 

[holmfamily1992]

Hey everyone!!

This time its not Dylan....thats a first. Its my daughter Stephanie, 15 with CF. I have made the appropriate phone calls and they have increased her rescue meds and PT to 4 times a day.

I know that CF can go from one extreme to the next and that is what is going on with Steph I think. She has always been sick here and there through out her entire life but nothing major and no hospitalizations. She was diagnosed in August and started the standard CF meds. She begun to get "sick" last week and is steadly getting worse. I took her to her primary yesterday to make sure it wasnt Mono. Negative. No strep either. She really doesnt have a sore throat but just feels like crap. Her doc said the back of her throat was a mucas highway but her lungs sounded clear. When she got up yesterday morning she coughed at least 25 times in 15 minutes. That is why her doctor increased her meds and PT. She is still coughing just not as much as she was and she says her lungs feel ok. She is sleeping an aweful lot since Sunday. (pretty much all day) She has no energy and isnt eating very much. She doesnt have any nutrional worries so thats not a concern right now. Its just abnormal for her.

Is this just CF?? I know everyone is different when it comes to this disease but its just not normal for her. We have to set up a 504 plan with the school because she is missing way to much.

She see's her CF doctor next week so hopefully she doesnt get worse.

So these are her symptoms:
Cough
runny nose
no energy
sleep all the time
sometimes a headache
sometimes a stomach ache.

Sounds like the flu....I just dont know.

Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">

 

[holmfamily1992]

Hey everyone!!

This time its not Dylan....thats a first. Its my daughter Stephanie, 15 with CF. I have made the appropriate phone calls and they have increased her rescue meds and PT to 4 times a day.

I know that CF can go from one extreme to the next and that is what is going on with Steph I think. She has always been sick here and there through out her entire life but nothing major and no hospitalizations. She was diagnosed in August and started the standard CF meds. She begun to get "sick" last week and is steadly getting worse. I took her to her primary yesterday to make sure it wasnt Mono. Negative. No strep either. She really doesnt have a sore throat but just feels like crap. Her doc said the back of her throat was a mucas highway but her lungs sounded clear. When she got up yesterday morning she coughed at least 25 times in 15 minutes. That is why her doctor increased her meds and PT. She is still coughing just not as much as she was and she says her lungs feel ok. She is sleeping an aweful lot since Sunday. (pretty much all day) She has no energy and isnt eating very much. She doesnt have any nutrional worries so thats not a concern right now. Its just abnormal for her.

Is this just CF?? I know everyone is different when it comes to this disease but its just not normal for her. We have to set up a 504 plan with the school because she is missing way to much.

She see's her CF doctor next week so hopefully she doesnt get worse.

So these are her symptoms:
Cough
runny nose
no energy
sleep all the time
sometimes a headache
sometimes a stomach ache.

Sounds like the flu....I just dont know.

Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">

 

[holmfamily1992]

Hey everyone!!

This time its not Dylan....thats a first. Its my daughter Stephanie, 15 with CF. I have made the appropriate phone calls and they have increased her rescue meds and PT to 4 times a day.

I know that CF can go from one extreme to the next and that is what is going on with Steph I think. She has always been sick here and there through out her entire life but nothing major and no hospitalizations. She was diagnosed in August and started the standard CF meds. She begun to get "sick" last week and is steadly getting worse. I took her to her primary yesterday to make sure it wasnt Mono. Negative. No strep either. She really doesnt have a sore throat but just feels like crap. Her doc said the back of her throat was a mucas highway but her lungs sounded clear. When she got up yesterday morning she coughed at least 25 times in 15 minutes. That is why her doctor increased her meds and PT. She is still coughing just not as much as she was and she says her lungs feel ok. She is sleeping an aweful lot since Sunday. (pretty much all day) She has no energy and isnt eating very much. She doesnt have any nutrional worries so thats not a concern right now. Its just abnormal for her.

Is this just CF?? I know everyone is different when it comes to this disease but its just not normal for her. We have to set up a 504 plan with the school because she is missing way to much.

She see's her CF doctor next week so hopefully she doesnt get worse.

So these are her symptoms:
Cough
runny nose
no energy
sleep all the time
sometimes a headache
sometimes a stomach ache.

Sounds like the flu....I just dont know.

Tina
<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">

 

[holmfamily1992]

Hey everyone!!
<br />
<br />This time its not Dylan....thats a first. Its my daughter Stephanie, 15 with CF. I have made the appropriate phone calls and they have increased her rescue meds and PT to 4 times a day.
<br />
<br />I know that CF can go from one extreme to the next and that is what is going on with Steph I think. She has always been sick here and there through out her entire life but nothing major and no hospitalizations. She was diagnosed in August and started the standard CF meds. She begun to get "sick" last week and is steadly getting worse. I took her to her primary yesterday to make sure it wasnt Mono. Negative. No strep either. She really doesnt have a sore throat but just feels like crap. Her doc said the back of her throat was a mucas highway but her lungs sounded clear. When she got up yesterday morning she coughed at least 25 times in 15 minutes. That is why her doctor increased her meds and PT. She is still coughing just not as much as she was and she says her lungs feel ok. She is sleeping an aweful lot since Sunday. (pretty much all day) She has no energy and isnt eating very much. She doesnt have any nutrional worries so thats not a concern right now. Its just abnormal for her.
<br />
<br />Is this just CF?? I know everyone is different when it comes to this disease but its just not normal for her. We have to set up a 504 plan with the school because she is missing way to much.
<br />
<br />She see's her CF doctor next week so hopefully she doesnt get worse.
<br />
<br />So these are her symptoms:
<br />Cough
<br />runny nose
<br />no energy
<br />sleep all the time
<br />sometimes a headache
<br />sometimes a stomach ache.
<br />
<br />Sounds like the flu....I just dont know.
<br />
<br />Tina
<br /><img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">

 

[Liza]

Hi Tina, Wow, 4 with CF, and I thought I was challenged with having 2!

My advice is to get her into the CF clinic sooner rather than later. If she's been sleeping alot more and overall just feeling cruddy and you've already been to your PCM it's best to get things ruled out by her CF doc. One of the things I missed seeing when my oldest had her first hospilization was her napping. She was 8 and would fall asleep after school. If her PCM didn't check her O2sats, those need to be checked out too. Sometimes low O2 can cause headaches. The coughing could be caused by post nasal drainage, since they did mention her mucus highway down the back of her throat. Has her coughing caused her to throw-up? If so and it's mucusy then it's possible it's all draining into her stomach which too can cause an upset stomach. You might also want a sinus infection to be ruled out. The PCM could have caught this but also maybe not. Sinus infections can give you a headache as well. Does she feel any pressure in her face or sinus' at all? Something to do for that and doesn't need to be prescribed and can help with the post nasal drainage, is doing a nasal wash. NeilMed makes an OTC nasal irrigation kit you can buy at Walgreens and many other pharmacies. It comes in a blue box, I think. With a little bottle with about 5 saline paks, if it works for her, you can purchase the saline paks in a box of 100. It helps to get rid of the mucus in the nasal passages and keeps it from running down the back of the throat so much.

First I'd call the CF clinc though, since she's not had any hospitalizations and sounds like she's been doing pretty good, you want to keep it that way as long as possible. If you wait, you could give something a chance to settle in.

She may not have any weight or nutritional issues now but an illness can quickly compromise that. How has her appetite been? Is she still eating normally or has that decreased?

I hope something here has helped and that she feels better soon.

 

[Liza]

Hi Tina, Wow, 4 with CF, and I thought I was challenged with having 2!

My advice is to get her into the CF clinic sooner rather than later. If she's been sleeping alot more and overall just feeling cruddy and you've already been to your PCM it's best to get things ruled out by her CF doc. One of the things I missed seeing when my oldest had her first hospilization was her napping. She was 8 and would fall asleep after school. If her PCM didn't check her O2sats, those need to be checked out too. Sometimes low O2 can cause headaches. The coughing could be caused by post nasal drainage, since they did mention her mucus highway down the back of her throat. Has her coughing caused her to throw-up? If so and it's mucusy then it's possible it's all draining into her stomach which too can cause an upset stomach. You might also want a sinus infection to be ruled out. The PCM could have caught this but also maybe not. Sinus infections can give you a headache as well. Does she feel any pressure in her face or sinus' at all? Something to do for that and doesn't need to be prescribed and can help with the post nasal drainage, is doing a nasal wash. NeilMed makes an OTC nasal irrigation kit you can buy at Walgreens and many other pharmacies. It comes in a blue box, I think. With a little bottle with about 5 saline paks, if it works for her, you can purchase the saline paks in a box of 100. It helps to get rid of the mucus in the nasal passages and keeps it from running down the back of the throat so much.

First I'd call the CF clinc though, since she's not had any hospitalizations and sounds like she's been doing pretty good, you want to keep it that way as long as possible. If you wait, you could give something a chance to settle in.

She may not have any weight or nutritional issues now but an illness can quickly compromise that. How has her appetite been? Is she still eating normally or has that decreased?

I hope something here has helped and that she feels better soon.

 

[Liza]

Hi Tina, Wow, 4 with CF, and I thought I was challenged with having 2!

My advice is to get her into the CF clinic sooner rather than later. If she's been sleeping alot more and overall just feeling cruddy and you've already been to your PCM it's best to get things ruled out by her CF doc. One of the things I missed seeing when my oldest had her first hospilization was her napping. She was 8 and would fall asleep after school. If her PCM didn't check her O2sats, those need to be checked out too. Sometimes low O2 can cause headaches. The coughing could be caused by post nasal drainage, since they did mention her mucus highway down the back of her throat. Has her coughing caused her to throw-up? If so and it's mucusy then it's possible it's all draining into her stomach which too can cause an upset stomach. You might also want a sinus infection to be ruled out. The PCM could have caught this but also maybe not. Sinus infections can give you a headache as well. Does she feel any pressure in her face or sinus' at all? Something to do for that and doesn't need to be prescribed and can help with the post nasal drainage, is doing a nasal wash. NeilMed makes an OTC nasal irrigation kit you can buy at Walgreens and many other pharmacies. It comes in a blue box, I think. With a little bottle with about 5 saline paks, if it works for her, you can purchase the saline paks in a box of 100. It helps to get rid of the mucus in the nasal passages and keeps it from running down the back of the throat so much.

First I'd call the CF clinc though, since she's not had any hospitalizations and sounds like she's been doing pretty good, you want to keep it that way as long as possible. If you wait, you could give something a chance to settle in.

She may not have any weight or nutritional issues now but an illness can quickly compromise that. How has her appetite been? Is she still eating normally or has that decreased?

I hope something here has helped and that she feels better soon.

 

[Liza]

Hi Tina, Wow, 4 with CF, and I thought I was challenged with having 2!

My advice is to get her into the CF clinic sooner rather than later. If she's been sleeping alot more and overall just feeling cruddy and you've already been to your PCM it's best to get things ruled out by her CF doc. One of the things I missed seeing when my oldest had her first hospilization was her napping. She was 8 and would fall asleep after school. If her PCM didn't check her O2sats, those need to be checked out too. Sometimes low O2 can cause headaches. The coughing could be caused by post nasal drainage, since they did mention her mucus highway down the back of her throat. Has her coughing caused her to throw-up? If so and it's mucusy then it's possible it's all draining into her stomach which too can cause an upset stomach. You might also want a sinus infection to be ruled out. The PCM could have caught this but also maybe not. Sinus infections can give you a headache as well. Does she feel any pressure in her face or sinus' at all? Something to do for that and doesn't need to be prescribed and can help with the post nasal drainage, is doing a nasal wash. NeilMed makes an OTC nasal irrigation kit you can buy at Walgreens and many other pharmacies. It comes in a blue box, I think. With a little bottle with about 5 saline paks, if it works for her, you can purchase the saline paks in a box of 100. It helps to get rid of the mucus in the nasal passages and keeps it from running down the back of the throat so much.

First I'd call the CF clinc though, since she's not had any hospitalizations and sounds like she's been doing pretty good, you want to keep it that way as long as possible. If you wait, you could give something a chance to settle in.

She may not have any weight or nutritional issues now but an illness can quickly compromise that. How has her appetite been? Is she still eating normally or has that decreased?

I hope something here has helped and that she feels better soon.

 

[Liza]

Hi Tina, Wow, 4 with CF, and I thought I was challenged with having 2!
<br />
<br />My advice is to get her into the CF clinic sooner rather than later. If she's been sleeping alot more and overall just feeling cruddy and you've already been to your PCM it's best to get things ruled out by her CF doc. One of the things I missed seeing when my oldest had her first hospilization was her napping. She was 8 and would fall asleep after school. If her PCM didn't check her O2sats, those need to be checked out too. Sometimes low O2 can cause headaches. The coughing could be caused by post nasal drainage, since they did mention her mucus highway down the back of her throat. Has her coughing caused her to throw-up? If so and it's mucusy then it's possible it's all draining into her stomach which too can cause an upset stomach. You might also want a sinus infection to be ruled out. The PCM could have caught this but also maybe not. Sinus infections can give you a headache as well. Does she feel any pressure in her face or sinus' at all? Something to do for that and doesn't need to be prescribed and can help with the post nasal drainage, is doing a nasal wash. NeilMed makes an OTC nasal irrigation kit you can buy at Walgreens and many other pharmacies. It comes in a blue box, I think. With a little bottle with about 5 saline paks, if it works for her, you can purchase the saline paks in a box of 100. It helps to get rid of the mucus in the nasal passages and keeps it from running down the back of the throat so much.
<br />
<br />First I'd call the CF clinc though, since she's not had any hospitalizations and sounds like she's been doing pretty good, you want to keep it that way as long as possible. If you wait, you could give something a chance to settle in.
<br />
<br />She may not have any weight or nutritional issues now but an illness can quickly compromise that. How has her appetite been? Is she still eating normally or has that decreased?
<br />
<br />I hope something here has helped and that she feels better soon.
<br />

 

[grassisgreener]

Have you investigated possible sinus trouble? It sounds like it could be that her sinuses are full and the post nasal drainage is causing the cough, especially the morning coughing. Sinus infections and congestion can make a person really tired too. For some reason it seems like sinuses get overlooked in CF patients. I had to really push getting my daughter's (age 5) sinus troubles taken seriously and it turned out that her sinuses were HORRIBLE. She is a different girl since we have finally gotten them under control.

Definately worth looking into. I hope she is feeling better soon!

 

[grassisgreener]

Have you investigated possible sinus trouble? It sounds like it could be that her sinuses are full and the post nasal drainage is causing the cough, especially the morning coughing. Sinus infections and congestion can make a person really tired too. For some reason it seems like sinuses get overlooked in CF patients. I had to really push getting my daughter's (age 5) sinus troubles taken seriously and it turned out that her sinuses were HORRIBLE. She is a different girl since we have finally gotten them under control.

Definately worth looking into. I hope she is feeling better soon!

 

[grassisgreener]

Have you investigated possible sinus trouble? It sounds like it could be that her sinuses are full and the post nasal drainage is causing the cough, especially the morning coughing. Sinus infections and congestion can make a person really tired too. For some reason it seems like sinuses get overlooked in CF patients. I had to really push getting my daughter's (age 5) sinus troubles taken seriously and it turned out that her sinuses were HORRIBLE. She is a different girl since we have finally gotten them under control.

Definately worth looking into. I hope she is feeling better soon!

 

[grassisgreener]

Have you investigated possible sinus trouble? It sounds like it could be that her sinuses are full and the post nasal drainage is causing the cough, especially the morning coughing. Sinus infections and congestion can make a person really tired too. For some reason it seems like sinuses get overlooked in CF patients. I had to really push getting my daughter's (age 5) sinus troubles taken seriously and it turned out that her sinuses were HORRIBLE. She is a different girl since we have finally gotten them under control.

Definately worth looking into. I hope she is feeling better soon!

 

[grassisgreener]

Have you investigated possible sinus trouble? It sounds like it could be that her sinuses are full and the post nasal drainage is causing the cough, especially the morning coughing. Sinus infections and congestion can make a person really tired too. For some reason it seems like sinuses get overlooked in CF patients. I had to really push getting my daughter's (age 5) sinus troubles taken seriously and it turned out that her sinuses were HORRIBLE. She is a different girl since we have finally gotten them under control.
<br />
<br />Definately worth looking into. I hope she is feeling better soon!

 

[holmfamily1992]

I think you are both right. She had a bit of nasal drainage this morning but that was about it. She doesnt seem to have any pressure we checked that yesterday. Her 02 was 97-98 so pretty normal. Nothing to worry about they said. Even though she doesnt have any pressure in her sinus's she could still be having sinus trouble. She see's her CF clince next week. We are 3 hours away so extra trips is almost impossible. I am sure they will run extra test concidering and they will probably start her on Nasonex and singulair also. We will see...No throwing up yet. She gags a lot due to the mucas and if she were to throw up it would be from the gagging. She doest feel like its that type of flu. She is just over all Crappy feeling is how she explains it. I asked her today to point out what is wrong and she couldnt. Just crappy is all she could come up with.

Tina

 

[holmfamily1992]

I think you are both right. She had a bit of nasal drainage this morning but that was about it. She doesnt seem to have any pressure we checked that yesterday. Her 02 was 97-98 so pretty normal. Nothing to worry about they said. Even though she doesnt have any pressure in her sinus's she could still be having sinus trouble. She see's her CF clince next week. We are 3 hours away so extra trips is almost impossible. I am sure they will run extra test concidering and they will probably start her on Nasonex and singulair also. We will see...No throwing up yet. She gags a lot due to the mucas and if she were to throw up it would be from the gagging. She doest feel like its that type of flu. She is just over all Crappy feeling is how she explains it. I asked her today to point out what is wrong and she couldnt. Just crappy is all she could come up with.

Tina

 

[holmfamily1992]

I think you are both right. She had a bit of nasal drainage this morning but that was about it. She doesnt seem to have any pressure we checked that yesterday. Her 02 was 97-98 so pretty normal. Nothing to worry about they said. Even though she doesnt have any pressure in her sinus's she could still be having sinus trouble. She see's her CF clince next week. We are 3 hours away so extra trips is almost impossible. I am sure they will run extra test concidering and they will probably start her on Nasonex and singulair also. We will see...No throwing up yet. She gags a lot due to the mucas and if she were to throw up it would be from the gagging. She doest feel like its that type of flu. She is just over all Crappy feeling is how she explains it. I asked her today to point out what is wrong and she couldnt. Just crappy is all she could come up with.

Tina

 

[holmfamily1992]

I think you are both right. She had a bit of nasal drainage this morning but that was about it. She doesnt seem to have any pressure we checked that yesterday. Her 02 was 97-98 so pretty normal. Nothing to worry about they said. Even though she doesnt have any pressure in her sinus's she could still be having sinus trouble. She see's her CF clince next week. We are 3 hours away so extra trips is almost impossible. I am sure they will run extra test concidering and they will probably start her on Nasonex and singulair also. We will see...No throwing up yet. She gags a lot due to the mucas and if she were to throw up it would be from the gagging. She doest feel like its that type of flu. She is just over all Crappy feeling is how she explains it. I asked her today to point out what is wrong and she couldnt. Just crappy is all she could come up with.

Tina

 

[holmfamily1992]

I think you are both right. She had a bit of nasal drainage this morning but that was about it. She doesnt seem to have any pressure we checked that yesterday. Her 02 was 97-98 so pretty normal. Nothing to worry about they said. Even though she doesnt have any pressure in her sinus's she could still be having sinus trouble. She see's her CF clince next week. We are 3 hours away so extra trips is almost impossible. I am sure they will run extra test concidering and they will probably start her on Nasonex and singulair also. We will see...No throwing up yet. She gags a lot due to the mucas and if she were to throw up it would be from the gagging. She doest feel like its that type of flu. She is just over all Crappy feeling is how she explains it. I asked her today to point out what is wrong and she couldnt. Just crappy is all she could come up with.
<br />
<br />Tina