Frustrated

[lovemygirl]

HI,
I am mostly looking to vent but if anyone has any suggestions that we can bring to the CF team or our daughter's pediatrician I am open to them.
Two months ago my daughter (6 yrs old w/cf) got a sinus infection. Because she had also cultured staph at her most recent culture they put her on cloxacillin for 30 days. After 25 days or so we asked to change the meds because they weren't working. By then she also had ear infections and was having trouble hearing. Then it moved to the eyes and she was miserable.
From there she was given 10 days of ceftin, and that didn't work either. The next antibiotic was Clavullin which worked great. She was happy, hearing well and her sinuses were clear. We took her to an ENT who said there was still fluid in the ear but since the Clavullin was working he thought it may resolve itself by the time the antibiotics were finished (she had been on a list for tubes a few years back and it resolved itself without tubes). He has put her on the list for tubes again just in case, and the next appt. is in March.
Through it all there has been no problems with her lungs and her cultures are clean (a bit of hemopholous)
Once the clavullin was done everything resurfaced and we were back at the pediatrician today. Now she is starting a cough and is very tired, both things are highly unusual for her. She has one eye infected, both ears and the sinuses again. Because the cough is starting they put her on ventolin and flovent for the first time and we noticed a difference during physio (able to cough better).
All that being said, has anyone been through this before? What helped? Is it a virus or a bacteria? We are told it is likely not CF related but we have our doubts.

 

[lovemygirl]

HI,
I am mostly looking to vent but if anyone has any suggestions that we can bring to the CF team or our daughter's pediatrician I am open to them.
Two months ago my daughter (6 yrs old w/cf) got a sinus infection. Because she had also cultured staph at her most recent culture they put her on cloxacillin for 30 days. After 25 days or so we asked to change the meds because they weren't working. By then she also had ear infections and was having trouble hearing. Then it moved to the eyes and she was miserable.
From there she was given 10 days of ceftin, and that didn't work either. The next antibiotic was Clavullin which worked great. She was happy, hearing well and her sinuses were clear. We took her to an ENT who said there was still fluid in the ear but since the Clavullin was working he thought it may resolve itself by the time the antibiotics were finished (she had been on a list for tubes a few years back and it resolved itself without tubes). He has put her on the list for tubes again just in case, and the next appt. is in March.
Through it all there has been no problems with her lungs and her cultures are clean (a bit of hemopholous)
Once the clavullin was done everything resurfaced and we were back at the pediatrician today. Now she is starting a cough and is very tired, both things are highly unusual for her. She has one eye infected, both ears and the sinuses again. Because the cough is starting they put her on ventolin and flovent for the first time and we noticed a difference during physio (able to cough better).
All that being said, has anyone been through this before? What helped? Is it a virus or a bacteria? We are told it is likely not CF related but we have our doubts.

 

[lovemygirl]

HI,
I am mostly looking to vent but if anyone has any suggestions that we can bring to the CF team or our daughter's pediatrician I am open to them.
Two months ago my daughter (6 yrs old w/cf) got a sinus infection. Because she had also cultured staph at her most recent culture they put her on cloxacillin for 30 days. After 25 days or so we asked to change the meds because they weren't working. By then she also had ear infections and was having trouble hearing. Then it moved to the eyes and she was miserable.
From there she was given 10 days of ceftin, and that didn't work either. The next antibiotic was Clavullin which worked great. She was happy, hearing well and her sinuses were clear. We took her to an ENT who said there was still fluid in the ear but since the Clavullin was working he thought it may resolve itself by the time the antibiotics were finished (she had been on a list for tubes a few years back and it resolved itself without tubes). He has put her on the list for tubes again just in case, and the next appt. is in March.
Through it all there has been no problems with her lungs and her cultures are clean (a bit of hemopholous)
Once the clavullin was done everything resurfaced and we were back at the pediatrician today. Now she is starting a cough and is very tired, both things are highly unusual for her. She has one eye infected, both ears and the sinuses again. Because the cough is starting they put her on ventolin and flovent for the first time and we noticed a difference during physio (able to cough better).
All that being said, has anyone been through this before? What helped? Is it a virus or a bacteria? We are told it is likely not CF related but we have our doubts.

 

[NoExcuses]

Not virus. Not bacteria. Allergies.

I had sinus infections 4-5 times a year and tons of tightness in my chest for years before I decided to look outside my CF as a problem and discovered that I have allergies.

Once I treated my allergies (environmental controls, anti-histamines, air purifiers, even allergy shots) I haven't had a sinus infection, not a single time and my lung function has improved.

I would take her to an allergist get her skin tested for allergies (not IgE blood test). Pediatricians are great cuz they are jacks of all trades, but they are experts in nothing.

Allergists will know how test well, and treat well. I would recommend that <img src="i/expressions/face-icon-small-smile.gif" border="0"> Best of luck to yoU!

 

[NoExcuses]

Not virus. Not bacteria. Allergies.

I had sinus infections 4-5 times a year and tons of tightness in my chest for years before I decided to look outside my CF as a problem and discovered that I have allergies.

Once I treated my allergies (environmental controls, anti-histamines, air purifiers, even allergy shots) I haven't had a sinus infection, not a single time and my lung function has improved.

I would take her to an allergist get her skin tested for allergies (not IgE blood test). Pediatricians are great cuz they are jacks of all trades, but they are experts in nothing.

Allergists will know how test well, and treat well. I would recommend that <img src="i/expressions/face-icon-small-smile.gif" border="0"> Best of luck to yoU!

 

[NoExcuses]

Not virus. Not bacteria. Allergies.

I had sinus infections 4-5 times a year and tons of tightness in my chest for years before I decided to look outside my CF as a problem and discovered that I have allergies.

Once I treated my allergies (environmental controls, anti-histamines, air purifiers, even allergy shots) I haven't had a sinus infection, not a single time and my lung function has improved.

I would take her to an allergist get her skin tested for allergies (not IgE blood test). Pediatricians are great cuz they are jacks of all trades, but they are experts in nothing.

Allergists will know how test well, and treat well. I would recommend that <img src="i/expressions/face-icon-small-smile.gif" border="0"> Best of luck to yoU!

 

[ddawes27]

Lovemygirl,
Today, I have the same complaint. My son just finished 3 weeks of Tobramycin and Ceftin 3 days ago. Today he has green drainage from his nose. This is so aggravating. He started using the Netti-pot 2 days ago. the package states that it can do away with allergies and cold congestion....if used often. I think I am going to talk to his coordinator about seeing an allergist as Sakasuka suggests...I have a feeling this is wishful thinking though. Good Luck to you and your daughter.
Doreen

 

[ddawes27]

Lovemygirl,
Today, I have the same complaint. My son just finished 3 weeks of Tobramycin and Ceftin 3 days ago. Today he has green drainage from his nose. This is so aggravating. He started using the Netti-pot 2 days ago. the package states that it can do away with allergies and cold congestion....if used often. I think I am going to talk to his coordinator about seeing an allergist as Sakasuka suggests...I have a feeling this is wishful thinking though. Good Luck to you and your daughter.
Doreen

 

[ddawes27]

Lovemygirl,
Today, I have the same complaint. My son just finished 3 weeks of Tobramycin and Ceftin 3 days ago. Today he has green drainage from his nose. This is so aggravating. He started using the Netti-pot 2 days ago. the package states that it can do away with allergies and cold congestion....if used often. I think I am going to talk to his coordinator about seeing an allergist as Sakasuka suggests...I have a feeling this is wishful thinking though. Good Luck to you and your daughter.
Doreen

 

[Alyssa]

My son is now 20 years old with very little CF symptoms. He was only diagnosed because of his sister's late diagnosis (see blog page for more details)

He had a lot of snot/sinus problems with he was about age 3-7. He was always stuffed up, every sneeze would produce a huge wad of snot - sometime green and infected, but most often just clear. Had we known at the time he had CF I'm sure we would have been treating him differently. But since we had no clue about CF, I took him to an allergist - he was allergic to "Wheat, Grains & Grasses" (that's the short list) I had to give him shots at home for a year or more and that seemed to have done the trick.

Perhaps it is worth looking into the allergy question, maybe your daughter has a combination of CF related issues and allergy problems.

 

[Alyssa]

My son is now 20 years old with very little CF symptoms. He was only diagnosed because of his sister's late diagnosis (see blog page for more details)

He had a lot of snot/sinus problems with he was about age 3-7. He was always stuffed up, every sneeze would produce a huge wad of snot - sometime green and infected, but most often just clear. Had we known at the time he had CF I'm sure we would have been treating him differently. But since we had no clue about CF, I took him to an allergist - he was allergic to "Wheat, Grains & Grasses" (that's the short list) I had to give him shots at home for a year or more and that seemed to have done the trick.

Perhaps it is worth looking into the allergy question, maybe your daughter has a combination of CF related issues and allergy problems.

 

[Alyssa]

My son is now 20 years old with very little CF symptoms. He was only diagnosed because of his sister's late diagnosis (see blog page for more details)

He had a lot of snot/sinus problems with he was about age 3-7. He was always stuffed up, every sneeze would produce a huge wad of snot - sometime green and infected, but most often just clear. Had we known at the time he had CF I'm sure we would have been treating him differently. But since we had no clue about CF, I took him to an allergist - he was allergic to "Wheat, Grains & Grasses" (that's the short list) I had to give him shots at home for a year or more and that seemed to have done the trick.

Perhaps it is worth looking into the allergy question, maybe your daughter has a combination of CF related issues and allergy problems.

 

[lovemygirl]

Thanks for the replies. I will definitely discuss allergy testing if this dose of antibiotics doesn't work. I had not thought of it since it is not allergy season. We also have an air system installed in the house that is used in hospitals for allergies, molds, odours etc., so it didn't occur to me.
I'll keep you posted.

Health & happiness to everyone for 2007!!!

 

[lovemygirl]

Thanks for the replies. I will definitely discuss allergy testing if this dose of antibiotics doesn't work. I had not thought of it since it is not allergy season. We also have an air system installed in the house that is used in hospitals for allergies, molds, odours etc., so it didn't occur to me.
I'll keep you posted.

Health & happiness to everyone for 2007!!!

 

[lovemygirl]

Thanks for the replies. I will definitely discuss allergy testing if this dose of antibiotics doesn't work. I had not thought of it since it is not allergy season. We also have an air system installed in the house that is used in hospitals for allergies, molds, odours etc., so it didn't occur to me.
I'll keep you posted.

Health & happiness to everyone for 2007!!!