16yo - Sick for 2 Months, Fever, WeightLoss, SOB

A

AUNTMARLA

New member
I'm hoping someone has the answers.. because the doctors do not. Even a suggestion on what to look for.. My niece is a CFRD (but doesn't treat herself for the Diabetes). She has a Feeding tube and Medaport.

Brittany's 16yo and has been sick for over 2 months. We assumed it was the Flu, everyone had it around Christmas time. She was sick and then felt better a few days - then sick again.

She would run a low grade fever 99, which brought on body aches, chills, fatique and of course more coughing. I few trips to the ER and CF doctors - nothing jumped out on X-rays or Lab Work..

On Monday, due to the increased Shortness of Breath and Fatique her family doctor admitted her for more tests..TB, CT Lung, Echo, Labs, X-rays, etc.. nothing jumped out... Her oxygen count was low..92% and she's lost 13 pounds in about a month so they transfered her to Pittsburgh Children's Hospital. The doctors think the weightloss could be from the the extra coughing and rapid breathing.

They started her on two strong antibiotics and now she's even sicker.. A higher fever 101 and vomiting and diarrhea and coughing..coughing..coughing.
She's been in the hospital 4 days and now reason..

Prayers and Suggestions WELCOMED!!!!
Aunt Marla
 
A

AUNTMARLA

New member
I'm hoping someone has the answers.. because the doctors do not. Even a suggestion on what to look for.. My niece is a CFRD (but doesn't treat herself for the Diabetes). She has a Feeding tube and Medaport.

Brittany's 16yo and has been sick for over 2 months. We assumed it was the Flu, everyone had it around Christmas time. She was sick and then felt better a few days - then sick again.

She would run a low grade fever 99, which brought on body aches, chills, fatique and of course more coughing. I few trips to the ER and CF doctors - nothing jumped out on X-rays or Lab Work..

On Monday, due to the increased Shortness of Breath and Fatique her family doctor admitted her for more tests..TB, CT Lung, Echo, Labs, X-rays, etc.. nothing jumped out... Her oxygen count was low..92% and she's lost 13 pounds in about a month so they transfered her to Pittsburgh Children's Hospital. The doctors think the weightloss could be from the the extra coughing and rapid breathing.

They started her on two strong antibiotics and now she's even sicker.. A higher fever 101 and vomiting and diarrhea and coughing..coughing..coughing.
She's been in the hospital 4 days and now reason..

Prayers and Suggestions WELCOMED!!!!
Aunt Marla
 
A

AUNTMARLA

New member
I'm hoping someone has the answers.. because the doctors do not. Even a suggestion on what to look for.. My niece is a CFRD (but doesn't treat herself for the Diabetes). She has a Feeding tube and Medaport.

Brittany's 16yo and has been sick for over 2 months. We assumed it was the Flu, everyone had it around Christmas time. She was sick and then felt better a few days - then sick again.

She would run a low grade fever 99, which brought on body aches, chills, fatique and of course more coughing. I few trips to the ER and CF doctors - nothing jumped out on X-rays or Lab Work..

On Monday, due to the increased Shortness of Breath and Fatique her family doctor admitted her for more tests..TB, CT Lung, Echo, Labs, X-rays, etc.. nothing jumped out... Her oxygen count was low..92% and she's lost 13 pounds in about a month so they transfered her to Pittsburgh Children's Hospital. The doctors think the weightloss could be from the the extra coughing and rapid breathing.

They started her on two strong antibiotics and now she's even sicker.. A higher fever 101 and vomiting and diarrhea and coughing..coughing..coughing.
She's been in the hospital 4 days and now reason..

Prayers and Suggestions WELCOMED!!!!
Aunt Marla
 
K

kybert

New member
you say she has cfrd but doesnt treat herself. what do you mean by this. that she needs to be treated but refuses? if thats the case, unctrolled diabetes explains all the symptoms shes been having.

btw, might be worth someone thoroughly checking her g tube and port out. might have a hidden infection.
 
K

kybert

New member
you say she has cfrd but doesnt treat herself. what do you mean by this. that she needs to be treated but refuses? if thats the case, unctrolled diabetes explains all the symptoms shes been having.

btw, might be worth someone thoroughly checking her g tube and port out. might have a hidden infection.
 
K

kybert

New member
you say she has cfrd but doesnt treat herself. what do you mean by this. that she needs to be treated but refuses? if thats the case, unctrolled diabetes explains all the symptoms shes been having.

btw, might be worth someone thoroughly checking her g tube and port out. might have a hidden infection.
 
A

AUNTMARLA

New member
When she was first diagnosised with CFRD (about a year or so ago) she had insulin & testing, then she stopped.. I've asked before - but as the Aunt, I don't have any say. I thought of that too, especially with the fatique.. but could uncontrolled diabetes cause fever?

As far as hidden infection, they did swab the g tube.. Thank you for replying..
 
A

AUNTMARLA

New member
When she was first diagnosised with CFRD (about a year or so ago) she had insulin & testing, then she stopped.. I've asked before - but as the Aunt, I don't have any say. I thought of that too, especially with the fatique.. but could uncontrolled diabetes cause fever?

As far as hidden infection, they did swab the g tube.. Thank you for replying..
 
A

AUNTMARLA

New member
When she was first diagnosised with CFRD (about a year or so ago) she had insulin & testing, then she stopped.. I've asked before - but as the Aunt, I don't have any say. I thought of that too, especially with the fatique.. but could uncontrolled diabetes cause fever?

As far as hidden infection, they did swab the g tube.. Thank you for replying..
 
I

izemmom

New member
Have they done a stool culture to check for c.diff? My daughter was hospitalized with it last month. It started out like the flu, got better, then got much much worse. Vomiting, diarrhea, fever(although not a high one). It wouldn't explain the coughing, but if her system is weakened, could she have also picked up another bug...? I don't know, I'm certainly no expert...but the symptoms just sounded familar to me. I wish her well!
 
I

izemmom

New member
Have they done a stool culture to check for c.diff? My daughter was hospitalized with it last month. It started out like the flu, got better, then got much much worse. Vomiting, diarrhea, fever(although not a high one). It wouldn't explain the coughing, but if her system is weakened, could she have also picked up another bug...? I don't know, I'm certainly no expert...but the symptoms just sounded familar to me. I wish her well!
 
I

izemmom

New member
Have they done a stool culture to check for c.diff? My daughter was hospitalized with it last month. It started out like the flu, got better, then got much much worse. Vomiting, diarrhea, fever(although not a high one). It wouldn't explain the coughing, but if her system is weakened, could she have also picked up another bug...? I don't know, I'm certainly no expert...but the symptoms just sounded familar to me. I wish her well!
 
S

Scarlett81

New member
I don't know if cfrd could be causing a fever. I have heard of low grade fevers affecting some people with sugar issues though. A while ago I was having many low grade fevers and they suspected cfrd, but it was negative. I turned out to be from a very rare circulatory disorder, but that was completely unrelated to cf so that has nothing to do with this.
I know what you mean about being the aunt and not being able to have much say. I have a cousin with cf who is really young and very sick-much worse than me. People always try to give them advice and from what I've heard, they don't take alot of it. People see me at family functions and then her and can't believe the difference between us. Of course, she could just have a legitimately worse case of cf than me.

Anyway-I am a HUGE believer of 2nd opinions, Marla. Not leaving your doctor or making a set in stone decision-just a 2nd opinion. If this were my daughter, I have to say I'd probably switch doctors. It bothers me that they took so long to get her on strong iv's, and that they haven't pursued further diabetes testing-from what it sounds like, that fell to the wayside? Of course, I probably don't have all the info. At the very least I'd find the next closest Cf center off of cff.org and call them right away. You can't play around with this. A lung infection not treated properly or quickly enough can/usually will cause permanent damage.

Again, I'm sure I don't have all the facts and this is just my opinion. Its alot easier said than done.
Take care
 
S

Scarlett81

New member
I don't know if cfrd could be causing a fever. I have heard of low grade fevers affecting some people with sugar issues though. A while ago I was having many low grade fevers and they suspected cfrd, but it was negative. I turned out to be from a very rare circulatory disorder, but that was completely unrelated to cf so that has nothing to do with this.
I know what you mean about being the aunt and not being able to have much say. I have a cousin with cf who is really young and very sick-much worse than me. People always try to give them advice and from what I've heard, they don't take alot of it. People see me at family functions and then her and can't believe the difference between us. Of course, she could just have a legitimately worse case of cf than me.

Anyway-I am a HUGE believer of 2nd opinions, Marla. Not leaving your doctor or making a set in stone decision-just a 2nd opinion. If this were my daughter, I have to say I'd probably switch doctors. It bothers me that they took so long to get her on strong iv's, and that they haven't pursued further diabetes testing-from what it sounds like, that fell to the wayside? Of course, I probably don't have all the info. At the very least I'd find the next closest Cf center off of cff.org and call them right away. You can't play around with this. A lung infection not treated properly or quickly enough can/usually will cause permanent damage.

Again, I'm sure I don't have all the facts and this is just my opinion. Its alot easier said than done.
Take care
 
S

Scarlett81

New member
I don't know if cfrd could be causing a fever. I have heard of low grade fevers affecting some people with sugar issues though. A while ago I was having many low grade fevers and they suspected cfrd, but it was negative. I turned out to be from a very rare circulatory disorder, but that was completely unrelated to cf so that has nothing to do with this.
I know what you mean about being the aunt and not being able to have much say. I have a cousin with cf who is really young and very sick-much worse than me. People always try to give them advice and from what I've heard, they don't take alot of it. People see me at family functions and then her and can't believe the difference between us. Of course, she could just have a legitimately worse case of cf than me.

Anyway-I am a HUGE believer of 2nd opinions, Marla. Not leaving your doctor or making a set in stone decision-just a 2nd opinion. If this were my daughter, I have to say I'd probably switch doctors. It bothers me that they took so long to get her on strong iv's, and that they haven't pursued further diabetes testing-from what it sounds like, that fell to the wayside? Of course, I probably don't have all the info. At the very least I'd find the next closest Cf center off of cff.org and call them right away. You can't play around with this. A lung infection not treated properly or quickly enough can/usually will cause permanent damage.

Again, I'm sure I don't have all the facts and this is just my opinion. Its alot easier said than done.
Take care
 
C

coltsfan715

New member
Well I agree with some of the others that have posted. UNCONTROLLED DIABETES CAN be a cause of many of her symtpoms.

When my blood sugar is high I get the following:
Shortness of Breath
Fatigue
Nausea
Headaches
Increased Cough and More Productive Cough

Before I was diagnosed with Diabetes and my sugars were completely uncontrolled I lost about 20lbs, so IF her sugars are completely uncontrolled and she needs insulin her weightloss could be caused by CFRD as well. Her weightloss will continue until her sugars are under control if that is the case.

I do not typically have fevers - but I do get cold sweats. I will have goosebumps but be sweating through my clothes.

I also think it is worth testing her for C. Difficil and worth testing her port or her blood for an infection. I had a friend that just kept getting worse and worse with illness and was actually sent for transplant evaluation and then they did a blood test and they discovered that she had a blood infection due to her port. They removed the port and treated the infection and things turned around beautifully. She was no longer in need of transplant and had a complete turn around and starting getting better. Now she is able to go and take Karate classes when before they found out about the infection she could barely go outside because of the heat.

Take Care and I hope that they figure out the problem soon.

Also as for IVs and not getting better. If she is diabetic and they are giving her meds mixed in dextrose that could be causing a worsening of symptoms. I had them do that to me once and it caused my sugars to go so far out of control that I spent 3 days in the bathroom vommiting, I was nauseous beyond belief, started losing weight cause I couldn't hold anything down and my sugars were so high. Also antibiotics in general can cause diarrhea and if she is getting extra CPT and neb treatments that is probably why she is coughing so much. Just a thought on that. Double check her meds and see if they are mixed in Dextrose and if they are ask if they can mix them in Saline ... some meds can NOT go in Saline but most can. Also talk to her and try to get them to set her up with an endocrinologist. Her blood sugars affect her breathing more than she may know - if she gets that under control - YES it can be a pain in the butt but she needs to do it - then she can start feeling better hopefully.


Thinking of you,
Lindsey
 
C

coltsfan715

New member
Well I agree with some of the others that have posted. UNCONTROLLED DIABETES CAN be a cause of many of her symtpoms.

When my blood sugar is high I get the following:
Shortness of Breath
Fatigue
Nausea
Headaches
Increased Cough and More Productive Cough

Before I was diagnosed with Diabetes and my sugars were completely uncontrolled I lost about 20lbs, so IF her sugars are completely uncontrolled and she needs insulin her weightloss could be caused by CFRD as well. Her weightloss will continue until her sugars are under control if that is the case.

I do not typically have fevers - but I do get cold sweats. I will have goosebumps but be sweating through my clothes.

I also think it is worth testing her for C. Difficil and worth testing her port or her blood for an infection. I had a friend that just kept getting worse and worse with illness and was actually sent for transplant evaluation and then they did a blood test and they discovered that she had a blood infection due to her port. They removed the port and treated the infection and things turned around beautifully. She was no longer in need of transplant and had a complete turn around and starting getting better. Now she is able to go and take Karate classes when before they found out about the infection she could barely go outside because of the heat.

Take Care and I hope that they figure out the problem soon.

Also as for IVs and not getting better. If she is diabetic and they are giving her meds mixed in dextrose that could be causing a worsening of symptoms. I had them do that to me once and it caused my sugars to go so far out of control that I spent 3 days in the bathroom vommiting, I was nauseous beyond belief, started losing weight cause I couldn't hold anything down and my sugars were so high. Also antibiotics in general can cause diarrhea and if she is getting extra CPT and neb treatments that is probably why she is coughing so much. Just a thought on that. Double check her meds and see if they are mixed in Dextrose and if they are ask if they can mix them in Saline ... some meds can NOT go in Saline but most can. Also talk to her and try to get them to set her up with an endocrinologist. Her blood sugars affect her breathing more than she may know - if she gets that under control - YES it can be a pain in the butt but she needs to do it - then she can start feeling better hopefully.


Thinking of you,
Lindsey
 
C

coltsfan715

New member
Well I agree with some of the others that have posted. UNCONTROLLED DIABETES CAN be a cause of many of her symtpoms.

When my blood sugar is high I get the following:
Shortness of Breath
Fatigue
Nausea
Headaches
Increased Cough and More Productive Cough

Before I was diagnosed with Diabetes and my sugars were completely uncontrolled I lost about 20lbs, so IF her sugars are completely uncontrolled and she needs insulin her weightloss could be caused by CFRD as well. Her weightloss will continue until her sugars are under control if that is the case.

I do not typically have fevers - but I do get cold sweats. I will have goosebumps but be sweating through my clothes.

I also think it is worth testing her for C. Difficil and worth testing her port or her blood for an infection. I had a friend that just kept getting worse and worse with illness and was actually sent for transplant evaluation and then they did a blood test and they discovered that she had a blood infection due to her port. They removed the port and treated the infection and things turned around beautifully. She was no longer in need of transplant and had a complete turn around and starting getting better. Now she is able to go and take Karate classes when before they found out about the infection she could barely go outside because of the heat.

Take Care and I hope that they figure out the problem soon.

Also as for IVs and not getting better. If she is diabetic and they are giving her meds mixed in dextrose that could be causing a worsening of symptoms. I had them do that to me once and it caused my sugars to go so far out of control that I spent 3 days in the bathroom vommiting, I was nauseous beyond belief, started losing weight cause I couldn't hold anything down and my sugars were so high. Also antibiotics in general can cause diarrhea and if she is getting extra CPT and neb treatments that is probably why she is coughing so much. Just a thought on that. Double check her meds and see if they are mixed in Dextrose and if they are ask if they can mix them in Saline ... some meds can NOT go in Saline but most can. Also talk to her and try to get them to set her up with an endocrinologist. Her blood sugars affect her breathing more than she may know - if she gets that under control - YES it can be a pain in the butt but she needs to do it - then she can start feeling better hopefully.


Thinking of you,
Lindsey
 
K

kybert

New member
she just stopped insulin? was this because her diabetes got better without insulin or did she just stop it herself? ditto the what lindsey said about the antibiotics. also, even without a dextrose infusion, antibiotics can still raise blood sugars. if it is diabetes causing these problems, she will never get better without treatment. just worse at a rapid rate.

swabbing the g tube isnt enough to look for infection. infections arent always visible on the skin. ask for a blood test. check for c.diff as others have said. apart from that i dunno. if someone is ill like that something should show up, even if it is cf related [infection markers and bacteria numbers would be up etc etc]. do you know what bugs are growing in her sputum? are they treating the vomiting and diarrhea?
 
K

kybert

New member
she just stopped insulin? was this because her diabetes got better without insulin or did she just stop it herself? ditto the what lindsey said about the antibiotics. also, even without a dextrose infusion, antibiotics can still raise blood sugars. if it is diabetes causing these problems, she will never get better without treatment. just worse at a rapid rate.

swabbing the g tube isnt enough to look for infection. infections arent always visible on the skin. ask for a blood test. check for c.diff as others have said. apart from that i dunno. if someone is ill like that something should show up, even if it is cf related [infection markers and bacteria numbers would be up etc etc]. do you know what bugs are growing in her sputum? are they treating the vomiting and diarrhea?
 
You must log in or register to reply here.
Top