Advice for my 8 year old

[kaylinsmom]

<P>Hello again. I know I probably complain alot but my 8 year old has had health problems for the past 2 years and the only thing that is improving is her asthma. Her fev's are the best they have been also but she is still having random fevers, cough that wont go away, stomach problems, sinus infections. Since Jan. she has been on about 4 antibiotics and 3 steriods. They switched her asthma meds from advair to symbicort and that has seemed to help. Her reflux is at its worst. She is on nexium but goes for an endoscopy on the 16th to have a biopsy and see why such bad reflux. She takes miralax for stomach and singulair. She is 1 month away from turning 9, weighs 58 pounds but is very pale with dark circles under eyes. She had 2 sweat tests done 2 years ago that were 30 and 44. Full panel genetic with one mutation showing up. I just dont know what else to do.</P>
<P>Would another sweat test be beneficial? She has seen a rheumotologists, gi doc, and endo doc, with tests coming back normal. I am stumped. She tires so easily and I am ready for her to be healthy. Thanks!</P>

 

[kaylinsmom]

<P>Hello again. I know I probably complain alot but my 8 year old has had health problems for the past 2 years and the only thing that is improving is her asthma. Her fev's are the best they have been also but she is still having random fevers, cough that wont go away, stomach problems, sinus infections. Since Jan. she has been on about 4 antibiotics and 3 steriods. They switched her asthma meds from advair to symbicort and that has seemed to help. Her reflux is at its worst. She is on nexium but goes for an endoscopy on the 16th to have a biopsy and see why such bad reflux. She takes miralax for stomach and singulair. She is 1 month away from turning 9, weighs 58 pounds but is very pale with dark circles under eyes. She had 2 sweat tests done 2 years ago that were 30 and 44. Full panel genetic with one mutation showing up. I just dont know what else to do.</P>
<P>Would another sweat test be beneficial? She has seen a rheumotologists, gi doc, and endo doc, with tests coming back normal. I am stumped. She tires so easily and I am ready for her to be healthy. Thanks!</P>

 

[kaylinsmom]

<P><BR>Hello again. I know I probably complain alot but my 8 year old has had health problems for the past 2 years and the only thing that is improving is her asthma. Her fev's are the best they have been also but she is still having random fevers, cough that wont go away, stomach problems, sinus infections. Since Jan. she has been on about 4 antibiotics and 3 steriods. They switched her asthma meds from advair to symbicort and that has seemed to help. Her reflux is at its worst. She is on nexium but goes for an endoscopy on the 16th to have a biopsy and see why such bad reflux. She takes miralax for stomach and singulair. She is 1 month away from turning 9, weighs 58 pounds but is very pale with dark circles under eyes. She had 2 sweat tests done 2 years ago that were 30 and 44. Full panel genetic with one mutation showing up. I just dont know what else to do.</P>
<P>Would another sweat test be beneficial? She has seen a rheumotologists, gi doc, and endo doc, with tests coming back normal. I am stumped. She tires so easily and I am ready for her to be healthy. Thanks!</P>

 

[Beccamom]

I just wanted to let you know that you are not alone. We have been in limbo for a diagnosis for a year now. I sent you a PM.

 

[Beccamom]

I just wanted to let you know that you are not alone. We have been in limbo for a diagnosis for a year now. I sent you a PM.

 

[Beccamom]

I just wanted to let you know that you are not alone. We have been in limbo for a diagnosis for a year now. I sent you a PM.

 

[Mallymookcf]

<P>I AM SO SORRY TO HEAR ABOUT YOUR DAUGHTER! i will definitly be praying for you and her! i dont have much advice to give you... that is a tough situation to be in it sounds like.  have they sputum cultured her.. i know for me personally i was sick for 6 months straight with no relief until finally a sputum culutre showed up showing psuedomonus and i was able to be put on the proper med for my infection (Cayston drug).  i had not grown it in 6 yrs until just now again.  sometimes the sputum cultures dont show the bacteria that could be in her lungs just by small periodic samples alone. maybe she should do a thourough sputum investigation. when i first grew b-cepatia they made me come in weekly and sometimes a couple times a week to give sputum cultures to see if the growth stopped and to monitor any new bacteria growing. she could be growing something that is not responding to those certain antibiotics she has been taking, causing the fever to persist etc...  just thinking outloud.  Good luck and God Bless!</P>
<P>Msllory</P>

 

[Mallymookcf]

<P>I AM SO SORRY TO HEAR ABOUT YOUR DAUGHTER! i will definitly be praying for you and her! i dont have much advice to give you... that is a tough situation to be in it sounds like. have they sputum cultured her.. i know for me personally i was sick for 6 months straight with no relief until finally a sputum culutre showed up showing psuedomonus and i was able to be put on the proper med for my infection (Cayston drug). i had not grown it in 6 yrs until just now again. sometimes the sputum cultures dont show the bacteria that could be in her lungs just by small periodic samples alone. maybe she should do a thourough sputum investigation.when i first grew b-cepatia they made me come in weekly and sometimes a couple times a week to give sputum cultures to see ifthe growth stopped and to monitor any new bacteria growing.she could be growing something that is not responding to those certainantibiotics she has been taking, causing the fever to persist etc... just thinking outloud. Good luck and God Bless!</P>
<P>Msllory</P>

 

[Mallymookcf]

<P><BR>I AM SO SORRY TO HEAR ABOUT YOUR DAUGHTER! i will definitly be praying for you and her! i dont have much advice to give you... that is a tough situation to be in it sounds like. have they sputum cultured her.. i know for me personally i was sick for 6 months straight with no relief until finally a sputum culutre showed up showing psuedomonus and i was able to be put on the proper med for my infection (Cayston drug). i had not grown it in 6 yrs until just now again. sometimes the sputum cultures dont show the bacteria that could be in her lungs just by small periodic samples alone. maybe she should do a thourough sputum investigation.when i first grew b-cepatia they made me come in weekly and sometimes a couple times a week to give sputum cultures to see ifthe growth stopped and to monitor any new bacteria growing.she could be growing something that is not responding to those certainantibiotics she has been taking, causing the fever to persist etc... just thinking outloud. Good luck and God Bless!</P>
<P>Msllory</P>

 

[StillFighting]

I agree with Mallymookcf. It may be advisable to have her sputum cultured. This was how the doctors that were treating me prior to diagnosis of CF discovered I had pseudomonous growing in my lungs. I was under ten different antibiotics before diagnosed with pseudomonous. None were the correct antibiotics to treat the pseudomonous. They finally put me on the right antibiotics and my health had improved significantly.

Wishing you all the best. I understand the frustration and the feeling of powerlessness in trying to resolve the issue.

Ana

 

[StillFighting]

I agree with Mallymookcf. It may be advisable to have her sputum cultured. This was how the doctors that were treating me prior to diagnosis of CF discovered I had pseudomonous growing in my lungs. I was under ten different antibiotics before diagnosed with pseudomonous. None were the correct antibiotics to treat the pseudomonous. They finally put me on the right antibiotics and my health had improved significantly.

Wishing you all the best. I understand the frustration and the feeling of powerlessness in trying to resolve the issue.

Ana

 

[StillFighting]

I agree with Mallymookcf. It may be advisable to have her sputum cultured. This was how the doctors that were treating me prior to diagnosis of CF discovered I had pseudomonous growing in my lungs. I was under ten different antibiotics before diagnosed with pseudomonous. None were the correct antibiotics to treat the pseudomonous. They finally put me on the right antibiotics and my health had improved significantly.
<br />
<br />Wishing you all the best. I understand the frustration and the feeling of powerlessness in trying to resolve the issue.
<br />
<br />Ana

 

[AnnieT]

I also agree with her having her sputum cultured. I'm so sorry and can def. understand how frustrated you are.

 

[AnnieT]

I also agree with her having her sputum cultured. I'm so sorry and can def. understand how frustrated you are.

 

[AnnieT]

I also agree with her having her sputum cultured. I'm so sorry and can def. understand how frustrated you are.

 

[kaylinsmom]

Thank you all so much for the advice. I will be asking her pulmo about a sputum culture!! Right now she is coughing up yellow stuff (sorry tmi) so it may be good timing to see if it is anything. I really appreciate everyone of you and pray for a cure for this horrible disease.

 

[kaylinsmom]

Thank you all so much for the advice. I will be asking her pulmo about a sputum culture!! Right now she is coughing up yellow stuff (sorry tmi) so it may be good timing to see if it is anything. I really appreciate everyone of you and pray for a cure for this horrible disease.

 

[kaylinsmom]

Thank you all so much for the advice. I will be asking her pulmo about a sputum culture!! Right now she is coughing up yellow stuff (sorry tmi) so it may be good timing to see if it is anything. I really appreciate everyone of you and pray for a cure for this horrible disease.

 

[canilucas]

Check her adrenal glands. Check an a.m. cortisol level on her.
Check her for RF (rheumatoid factor, ANA panel) --I would go to another endo for sure.
And Rheumatologist... As far as Pulm goes, I would go to a center that takes you seriously as a lot of these symptoms could be CF too.... Keep pushing, keep asking..
You are the best advocate for your child!!!

 

[canilucas]

Check her adrenal glands. Check an a.m. cortisol level on her.
Check her for RF (rheumatoid factor, ANA panel) --I would go to another endo for sure.
And Rheumatologist... As far as Pulm goes, I would go to a center that takes you seriously as a lot of these symptoms could be CF too.... Keep pushing, keep asking..
You are the best advocate for your child!!!