Any suggestions would be helpful

KHoyle

New member
So, we talked extensively with our Pedia yesterday and proposed a plan of attack. It appears that the starting point of the problem, is always the nose. My daughter gets stuffy, which is probably due to sinus issues. The since these symptoms occur so fast after she gets off of an antibiotic, it appears not to be new bacteria, but the old stuff reblossuming.

As I stated previously, she gets stuffy. She goes to bed and the stuffy stuff drips, (I did and extensive search on PostNasal Drip and CF and it appears to be the problem), causing a cough. She tries to cough out the mucus, which has thickened through out the evening, (she usually starts coughing after about 6 hours of sleep), and causes irritation in her bronch and throat. She wakes up hoarse and irritated, and the next night it worsens. Each night it gets worse until she has to use an oral steroid for the inflamation and naturally she takes an oral antibiotic since she is taking the steroid.

Rather than treating the imflamation after the fact with a treatment like Ibuprofin Therapy, we would like to be proactive. As such, we are going to focus on her sinuses. We have gotten a new ENT, (who is not a jerk, but that is a separate issue), and will be having a prelim CT Scan to assess the situation. We are going to continue nasal/sinus flushing with a Neti Pot www.sinurinse.com or a Sinus Rinse www.neilmed.com. Both of these products flush the mucus out of the sinuses/nasal passages without drugs.

We have also sent info to our Pedi and new ENT on the SinuNeb system. www.sinuneb.com. This product is a Pari Nebulizer with a nasal attachment designed so that antibiotics can be nebulized directly into the nasal passageways and the sinuses. This results in an topical rather than a systemic application of antibiotics. According to the info, the SinuNeb, requires a shorter course and a lower dosage of antibiotic, because it is delivered to the source, rather than the bloodstream.

We hope that this works to control the problem.I hope this info helps.
 

wanderlost

New member
I use a neti all the time and it really helps a lot - just watch how much salt you use becasue too much burns! Also, I add a little tincture of goldenseal into mine as it helps kill some of the bacteria living in the nose. good luck!
 

anonymous

New member
For what it is worth...my daughter, now 20, started taking Bactrim and Keflex when she was 8 years old. Every time she stopped, her symptoms worsened. The doctor who originally prescribed the drugs retired and every CF specialist after that said those antibiotics could not have been helping (she also originally just cultured staph, which then disappeared). In college, her pfts started to decline once again, after going off Bactrim and Keflex but starting Zithromax. One year later, she added Bactrim to the Zithromax and her pfts soared. I don't think cultures tell the whole story. If your child is clearly better while on a particular medication, speak up. I am not thrilled that she is on antibiotics at all times, but in 12 years, nothing dire has occurred and she has never gotten a yeast infection.
 

KHoyle

New member
Hello,

It has been nearly a year and a half since I posted on this site. My daughter, (now 8 years old), had sinus surgery and started on the SinuNeb system. We adminstered the AntiBiotics initially for 28 day on and 28 days off, through the SinuNeb. Eventually we were able to do 28 days and months off.

My daughter is doing great. I have read that some CF treatment research is starting to focus more on the sinuses as a precursor to the lungs. If you can address the issue int he Sinuses, it may not drip down and affect the lungs.

The sinuses seem to be the focus of my daughter's issues. We have not had a sleepless night since starting the SinuNeb. She progresses through "colds" quickly and is doing great.

Keep in mind that the suggestion and the research for the SinuNeb system was done by my wife and myself. We then brought the info to the doctors, and they agreed. You really need to advocate on behalf of yourself or your child when it comes to this CF stuff.

Anyway, thanks for all your input, support and care!!!
 

KHoyle

New member
Hello,

It has been nearly a year and a half since I posted on this site. My daughter, (now 8 years old), had sinus surgery and started on the SinuNeb system. We adminstered the AntiBiotics initially for 28 day on and 28 days off, through the SinuNeb. Eventually we were able to do 28 days and months off.

My daughter is doing great. I have read that some CF treatment research is starting to focus more on the sinuses as a precursor to the lungs. If you can address the issue int he Sinuses, it may not drip down and affect the lungs.

The sinuses seem to be the focus of my daughter's issues. We have not had a sleepless night since starting the SinuNeb. She progresses through "colds" quickly and is doing great.

Keep in mind that the suggestion and the research for the SinuNeb system was done by my wife and myself. We then brought the info to the doctors, and they agreed. You really need to advocate on behalf of yourself or your child when it comes to this CF stuff.

Anyway, thanks for all your input, support and care!!!
 

KHoyle

New member
Hello,

It has been nearly a year and a half since I posted on this site. My daughter, (now 8 years old), had sinus surgery and started on the SinuNeb system. We adminstered the AntiBiotics initially for 28 day on and 28 days off, through the SinuNeb. Eventually we were able to do 28 days and months off.

My daughter is doing great. I have read that some CF treatment research is starting to focus more on the sinuses as a precursor to the lungs. If you can address the issue int he Sinuses, it may not drip down and affect the lungs.

The sinuses seem to be the focus of my daughter's issues. We have not had a sleepless night since starting the SinuNeb. She progresses through "colds" quickly and is doing great.

Keep in mind that the suggestion and the research for the SinuNeb system was done by my wife and myself. We then brought the info to the doctors, and they agreed. You really need to advocate on behalf of yourself or your child when it comes to this CF stuff.

Anyway, thanks for all your input, support and care!!!
 

KHoyle

New member
Hello,

It has been nearly a year and a half since I posted on this site. My daughter, (now 8 years old), had sinus surgery and started on the SinuNeb system. We adminstered the AntiBiotics initially for 28 day on and 28 days off, through the SinuNeb. Eventually we were able to do 28 days and months off.

My daughter is doing great. I have read that some CF treatment research is starting to focus more on the sinuses as a precursor to the lungs. If you can address the issue int he Sinuses, it may not drip down and affect the lungs.

The sinuses seem to be the focus of my daughter's issues. We have not had a sleepless night since starting the SinuNeb. She progresses through "colds" quickly and is doing great.

Keep in mind that the suggestion and the research for the SinuNeb system was done by my wife and myself. We then brought the info to the doctors, and they agreed. You really need to advocate on behalf of yourself or your child when it comes to this CF stuff.

Anyway, thanks for all your input, support and care!!!
 

KHoyle

New member
Hello,

It has been nearly a year and a half since I posted on this site. My daughter, (now 8 years old), had sinus surgery and started on the SinuNeb system. We adminstered the AntiBiotics initially for 28 day on and 28 days off, through the SinuNeb. Eventually we were able to do 28 days and months off.

My daughter is doing great. I have read that some CF treatment research is starting to focus more on the sinuses as a precursor to the lungs. If you can address the issue int he Sinuses, it may not drip down and affect the lungs.

The sinuses seem to be the focus of my daughter's issues. We have not had a sleepless night since starting the SinuNeb. She progresses through "colds" quickly and is doing great.

Keep in mind that the suggestion and the research for the SinuNeb system was done by my wife and myself. We then brought the info to the doctors, and they agreed. You really need to advocate on behalf of yourself or your child when it comes to this CF stuff.

Anyway, thanks for all your input, support and care!!!
 

KHoyle

New member
Hello,

It has been nearly a year and a half since I posted on this site. My daughter, (now 8 years old), had sinus surgery and started on the SinuNeb system. We adminstered the AntiBiotics initially for 28 day on and 28 days off, through the SinuNeb. Eventually we were able to do 28 days and months off.

My daughter is doing great. I have read that some CF treatment research is starting to focus more on the sinuses as a precursor to the lungs. If you can address the issue int he Sinuses, it may not drip down and affect the lungs.

The sinuses seem to be the focus of my daughter's issues. We have not had a sleepless night since starting the SinuNeb. She progresses through "colds" quickly and is doing great.

Keep in mind that the suggestion and the research for the SinuNeb system was done by my wife and myself. We then brought the info to the doctors, and they agreed. You really need to advocate on behalf of yourself or your child when it comes to this CF stuff.

Anyway, thanks for all your input, support and care!!!
 

KHoyle

New member
Hello,

It has been nearly a year and a half since I posted on this site. My daughter, (now 8 years old), had sinus surgery and started on the SinuNeb system. We adminstered the AntiBiotics initially for 28 day on and 28 days off, through the SinuNeb. Eventually we were able to do 28 days and months off.

My daughter is doing great. I have read that some CF treatment research is starting to focus more on the sinuses as a precursor to the lungs. If you can address the issue int he Sinuses, it may not drip down and affect the lungs.

The sinuses seem to be the focus of my daughter's issues. We have not had a sleepless night since starting the SinuNeb. She progresses through "colds" quickly and is doing great.

Keep in mind that the suggestion and the research for the SinuNeb system was done by my wife and myself. We then brought the info to the doctors, and they agreed. You really need to advocate on behalf of yourself or your child when it comes to this CF stuff.

Anyway, thanks for all your input, support and care!!!
 

KHoyle

New member
Hello,

It has been nearly a year and a half since I posted on this site. My daughter, (now 8 years old), had sinus surgery and started on the SinuNeb system. We adminstered the AntiBiotics initially for 28 day on and 28 days off, through the SinuNeb. Eventually we were able to do 28 days and months off.

My daughter is doing great. I have read that some CF treatment research is starting to focus more on the sinuses as a precursor to the lungs. If you can address the issue int he Sinuses, it may not drip down and affect the lungs.

The sinuses seem to be the focus of my daughter's issues. We have not had a sleepless night since starting the SinuNeb. She progresses through "colds" quickly and is doing great.

Keep in mind that the suggestion and the research for the SinuNeb system was done by my wife and myself. We then brought the info to the doctors, and they agreed. You really need to advocate on behalf of yourself or your child when it comes to this CF stuff.

Anyway, thanks for all your input, support and care!!!
 

KHoyle

New member
Hello,

It has been nearly a year and a half since I posted on this site. My daughter, (now 8 years old), had sinus surgery and started on the SinuNeb system. We adminstered the AntiBiotics initially for 28 day on and 28 days off, through the SinuNeb. Eventually we were able to do 28 days and months off.

My daughter is doing great. I have read that some CF treatment research is starting to focus more on the sinuses as a precursor to the lungs. If you can address the issue int he Sinuses, it may not drip down and affect the lungs.

The sinuses seem to be the focus of my daughter's issues. We have not had a sleepless night since starting the SinuNeb. She progresses through "colds" quickly and is doing great.

Keep in mind that the suggestion and the research for the SinuNeb system was done by my wife and myself. We then brought the info to the doctors, and they agreed. You really need to advocate on behalf of yourself or your child when it comes to this CF stuff.

Anyway, thanks for all your input, support and care!!!
 

KHoyle

New member
Hello,

It has been nearly a year and a half since I posted on this site. My daughter, (now 8 years old), had sinus surgery and started on the SinuNeb system. We adminstered the AntiBiotics initially for 28 day on and 28 days off, through the SinuNeb. Eventually we were able to do 28 days and months off.

My daughter is doing great. I have read that some CF treatment research is starting to focus more on the sinuses as a precursor to the lungs. If you can address the issue int he Sinuses, it may not drip down and affect the lungs.

The sinuses seem to be the focus of my daughter's issues. We have not had a sleepless night since starting the SinuNeb. She progresses through "colds" quickly and is doing great.

Keep in mind that the suggestion and the research for the SinuNeb system was done by my wife and myself. We then brought the info to the doctors, and they agreed. You really need to advocate on behalf of yourself or your child when it comes to this CF stuff.

Anyway, thanks for all your input, support and care!!!
 

KHoyle

New member
Hello,

It has been nearly a year and a half since I posted on this site. My daughter, (now 8 years old), had sinus surgery and started on the SinuNeb system. We adminstered the AntiBiotics initially for 28 day on and 28 days off, through the SinuNeb. Eventually we were able to do 28 days and months off.

My daughter is doing great. I have read that some CF treatment research is starting to focus more on the sinuses as a precursor to the lungs. If you can address the issue int he Sinuses, it may not drip down and affect the lungs.

The sinuses seem to be the focus of my daughter's issues. We have not had a sleepless night since starting the SinuNeb. She progresses through "colds" quickly and is doing great.

Keep in mind that the suggestion and the research for the SinuNeb system was done by my wife and myself. We then brought the info to the doctors, and they agreed. You really need to advocate on behalf of yourself or your child when it comes to this CF stuff.

Anyway, thanks for all your input, support and care!!!
 

KHoyle

New member
Hello,

It has been nearly a year and a half since I posted on this site. My daughter, (now 8 years old), had sinus surgery and started on the SinuNeb system. We adminstered the AntiBiotics initially for 28 day on and 28 days off, through the SinuNeb. Eventually we were able to do 28 days and months off.

My daughter is doing great. I have read that some CF treatment research is starting to focus more on the sinuses as a precursor to the lungs. If you can address the issue int he Sinuses, it may not drip down and affect the lungs.

The sinuses seem to be the focus of my daughter's issues. We have not had a sleepless night since starting the SinuNeb. She progresses through "colds" quickly and is doing great.

Keep in mind that the suggestion and the research for the SinuNeb system was done by my wife and myself. We then brought the info to the doctors, and they agreed. You really need to advocate on behalf of yourself or your child when it comes to this CF stuff.

Anyway, thanks for all your input, support and care!!!
 

KHoyle

New member
Hello,

It has been nearly a year and a half since I posted on this site. My daughter, (now 8 years old), had sinus surgery and started on the SinuNeb system. We adminstered the AntiBiotics initially for 28 day on and 28 days off, through the SinuNeb. Eventually we were able to do 28 days and months off.

My daughter is doing great. I have read that some CF treatment research is starting to focus more on the sinuses as a precursor to the lungs. If you can address the issue int he Sinuses, it may not drip down and affect the lungs.

The sinuses seem to be the focus of my daughter's issues. We have not had a sleepless night since starting the SinuNeb. She progresses through "colds" quickly and is doing great.

Keep in mind that the suggestion and the research for the SinuNeb system was done by my wife and myself. We then brought the info to the doctors, and they agreed. You really need to advocate on behalf of yourself or your child when it comes to this CF stuff.

Anyway, thanks for all your input, support and care!!!
 

KHoyle

New member
Hello,

It has been nearly a year and a half since I posted on this site. My daughter, (now 8 years old), had sinus surgery and started on the SinuNeb system. We adminstered the AntiBiotics initially for 28 day on and 28 days off, through the SinuNeb. Eventually we were able to do 28 days and months off.

My daughter is doing great. I have read that some CF treatment research is starting to focus more on the sinuses as a precursor to the lungs. If you can address the issue int he Sinuses, it may not drip down and affect the lungs.

The sinuses seem to be the focus of my daughter's issues. We have not had a sleepless night since starting the SinuNeb. She progresses through "colds" quickly and is doing great.

Keep in mind that the suggestion and the research for the SinuNeb system was done by my wife and myself. We then brought the info to the doctors, and they agreed. You really need to advocate on behalf of yourself or your child when it comes to this CF stuff.

Anyway, thanks for all your input, support and care!!!
 

KHoyle

New member
Hello,

It has been nearly a year and a half since I posted on this site. My daughter, (now 8 years old), had sinus surgery and started on the SinuNeb system. We adminstered the AntiBiotics initially for 28 day on and 28 days off, through the SinuNeb. Eventually we were able to do 28 days and months off.

My daughter is doing great. I have read that some CF treatment research is starting to focus more on the sinuses as a precursor to the lungs. If you can address the issue int he Sinuses, it may not drip down and affect the lungs.

The sinuses seem to be the focus of my daughter's issues. We have not had a sleepless night since starting the SinuNeb. She progresses through "colds" quickly and is doing great.

Keep in mind that the suggestion and the research for the SinuNeb system was done by my wife and myself. We then brought the info to the doctors, and they agreed. You really need to advocate on behalf of yourself or your child when it comes to this CF stuff.

Anyway, thanks for all your input, support and care!!!
 
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