Recent content by hlgconk

Hi! My 8 year old daughter just finished the year long trial. We found it to be a lot of work. There was no signifcant change in levels. She was not compensated!! How did you get pd $800?

Hi! My 8 year old daughter just finished the year long trial. We found it to be a lot of work. There was no signifcant change in levels. She was not compensated!! How did you get pd $800?

Hi! My 8 year old daughter just finished the year long trial. We found it to be a lot of work. There was no signifcant change in levels. She was not compensated!! How did you get pd $800?

Hi! My 8 year old daughter just finished the year long trial. We found it to be a lot of work. There was no signifcant change in levels. She was not compensated!! How did you get pd $800?

Hi! My 8 year old daughter just finished the year long trial. We found it to be a lot of work. There was no signifcant change in levels. She was not compensated!! How did you get pd $800?

Hi Laura, I too am new to CF. My 6 year old was dx about two months ago and my 7 month old too has CF. It is my understanding that your sweat test is borderline (I think low) however, genetic testing will give you some knowledge that you are looking for. If your son has the genetic make-up...

Hi Laura, I too am new to CF. My 6 year old was dx about two months ago and my 7 month old too has CF. It is my understanding that your sweat test is borderline (I think low) however, genetic testing will give you some knowledge that you are looking for. If your son has the genetic make-up...

My six year old daughter was dx about 2 months ago w/CF and last week my 7 month old was dx w/ Atypical CF. They both have delts 508, 5T, 7T and 9T variants, I believe. The six year old is taking all the usual meds 3x a day. The 7th month old has only had 1 resp. infection and is not on any...

My six year old daughter was dx about 2 months ago w/CF and last week my 7 month old was dx w/ Atypical CF. They both have delts 508, 5T, 7T and 9T variants, I believe. The six year old is taking all the usual meds 3x a day. The 7th month old has only had 1 resp. infection and is not on any...

Thanks for all of your input and great suggestions! After I told the "team" that I had no problem bring an advocate and going to an impartial hearing we did get the 504 plan. I have to say that it is troubling that she would not get it if I did not insist! Seems crazy!!!

Thanks for all of your input and great suggestions! After I told the "team" that I had no problem bring an advocate and going to an impartial hearing we did get the 504 plan. I have to say that it is troubling that she would not get it if I did not insist! Seems crazy!!!

My six year old daughter started Pulmozyme about a month ago. The only side effect that we notice is excessive coughing. She does seem pale since starting all of her treatments, not really sure what it is all about. We were told that pulmozyme would work to her benefit as an adult, she'd...

My six year old daughter started Pulmozyme about a month ago. The only side effect that we notice is excessive coughing. She does seem pale since starting all of her treatments, not really sure what it is all about. We were told that pulmozyme would work to her benefit as an adult, she'd...

Hi. I just heard from my daughter's school dist. that they do not think that she needs a 504, I disagree! The dist. will grant and put all of my reasonable request in writing on the school "health plan" but will not grant a 504 at this time. The director of Special education feels that if she...

Hi. I just heard from my daughter's school dist. that they do not think that she needs a 504, I disagree! The dist. will grant and put all of my reasonable request in writing on the school "health plan" but will not grant a 504 at this time. The director of Special education feels that if she...