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  1. R

    What is your FEV1 Score?

    My daughter (19yoa) has had a baseline in the high 80's for three or four years now. In the past 6 months, they have dropped to 55-58% and they are not coming up after excerbations. Her sats are 98. What are some ways for her to increase her baseline?
  2. R

    What is your FEV1 Score?

    My daughter (19yoa) has had a baseline in the high 80's for three or four years now. In the past 6 months, they have dropped to 55-58% and they are not coming up after excerbations. Her sats are 98. What are some ways for her to increase her baseline?
  3. R

    Genotype

    We recently found out that no one seems to know my daughter's genotype even though she was diagnosed 18 years ago. Nothing in her files! We are now fighting the insurance company to have the genetic testing competed. Anyone else had this problem?
  4. R

    Genotype

    We recently found out that no one seems to know my daughter's genotype even though she was diagnosed 18 years ago. Nothing in her files! We are now fighting the insurance company to have the genetic testing competed. Anyone else had this problem?
  5. R

    Feeling crappy!

    So it's my first time here. I was diagnosed @ 6 months.. I'm now 14... Dealing with all the same stuff as everybody else.. meds, treatments, hospitals. blah-blah-blah...I guess i've been doin OK.. some days good, some not.. I hate to sit around and do nothing. Too boring! I'm on my high school...
  6. R

    Feeling crappy!

    So it's my first time here. I was diagnosed @ 6 months.. I'm now 14... Dealing with all the same stuff as everybody else.. meds, treatments, hospitals. blah-blah-blah...I guess i've been doin OK.. some days good, some not.. I hate to sit around and do nothing. Too boring! I'm on my high school...
  7. R

    Feeling crappy!

    So it's my first time here. I was diagnosed @ 6 months.. I'm now 14... Dealing with all the same stuff as everybody else.. meds, treatments, hospitals. blah-blah-blah...I guess i've been doin OK.. some days good, some not.. I hate to sit around and do nothing. Too boring! I'm on my high school...
  8. R

    Feeling crappy!

    So it's my first time here. I was diagnosed @ 6 months.. I'm now 14... Dealing with all the same stuff as everybody else.. meds, treatments, hospitals. blah-blah-blah...I guess i've been doin OK.. some days good, some not.. I hate to sit around and do nothing. Too boring! I'm on my high school...
  9. R

    Feeling crappy!

    So it's my first time here. I was diagnosed @ 6 months.. I'm now 14... Dealing with all the same stuff as everybody else.. meds, treatments, hospitals. blah-blah-blah...I guess i've been doin OK.. some days good, some not.. I hate to sit around and do nothing. Too boring! I'm on my high school...
  10. R

    Has anyone used Mucolyxir???

    Yes, our local Doctor... he has given us the info.. but the children's hospital doesn't seem to put much faith in it... not enough data for them . Homeopathic medications are not some thing they suggest.
  11. R

    What are Vests?

    My daughter has had a vest for 3 years now.. She is now 12 years old. Besides the physical benefits, it really helps her feel she has control of her treatments. It's a treatment that she can do herself and not have to rely on some one to help her.
  12. R

    Has anyone used Mucolyxir???

    Has anyone used or is familiar with Mucolyxir??? We would like as much information as possible regarding the benefits and side-effects of this product...
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