Cystic Fibrosis Forum (EXP)

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  1. B

    When cf will no longer be an incurable disease

    i pray for a cure every night and when i see my son suffer. im not an optimist. never have been. and in my honest opinion no i dont think there will be a cure. and the only reason i believe that is because the money is in the meds for cf not the cure for cf. insurance, docs, pharm, and anyone...
  2. B

    mild staph

    Aidan has cultured staph for almost 2 years now. the only time we cover it is when he has an exhaberation and is very ill and hes on abx. they also put him on bactrim to cover the other bugs he has cultured. hes got like 3 of them he always cultures. pseudo is also one of them, and i was told...
  3. B

    65 Redroses documentary

    i really wish they would ahow Eva's story on a local channel. like ABC that EVERYONE gets. i posted on fb about it and when and what channel it comes on and no1 watched it. that makes me really sad...
  4. B

    65 Redroses documentary

    i really wish they would ahow Eva's story on a local channel. like ABC that EVERYONE gets. i posted on fb about it and when and what channel it comes on and no1 watched it. that makes me really sad...
  5. B

    Question about vest fitting

    im not too sure if the fit for my 6 year old is right either. he started with the black one when he was three then we switched to the blue one when he was 5. with the black one i was told when it is inflated i should be able to fit my closed fist in it. so i just do the same with the blue one...
  6. B

    Question about vest fitting

    im not too sure if the fit for my 6 year old is right either. he started with the black one when he was three then we switched to the blue one when he was 5. with the black one i was told when it is inflated i should be able to fit my closed fist in it. so i just do the same with the blue one...
  7. B

    Alternatives for treating Pseudo in my littlest one!

    my 6 year old son is on Tobi month on and month off probably for the rest of his life. freakin 6 years old. ugh i hate that. we were on cayston but they kicked us out cause of the shortage so were using tobi again. it is a lot of time and aidan really doesnt like it. but we have to keep that...
  8. B

    Alternatives for treating Pseudo in my littlest one!

    my 6 year old son is on Tobi month on and month off probably for the rest of his life. freakin 6 years old. ugh i hate that. we were on cayston but they kicked us out cause of the shortage so were using tobi again. it is a lot of time and aidan really doesnt like it. but we have to keep that...
  9. B

    Food Stamps

    im wondering if we can get food stamps for Aidan. we finally got medicade for him. and food stamps would be very helpful. i spent 235.00 at the food store today and it was all for aidan. im gona apply and see what happens. does anyone out here get them even though you and or your spouce works...
  10. B

    Food Stamps

    im wondering if we can get food stamps for Aidan. we finally got medicade for him. and food stamps would be very helpful. i spent 235.00 at the food store today and it was all for aidan. im gona apply and see what happens. does anyone out here get them even though you and or your spouce works...
  11. B

    allergies, allergy meds, black circles

    Aidan has developed severe sinus issues. chronic sinus infection that always led to picc lines. then a 2 hr surgery to remove blockages in his sinuses. that really helped. i would suggest getting to see an ENT. then after the surgery we tried sinus rinses and he cant do them. i tried my best and...
  12. B

    allergies, allergy meds, black circles

    Aidan has developed severe sinus issues. chronic sinus infection that always led to picc lines. then a 2 hr surgery to remove blockages in his sinuses. that really helped. i would suggest getting to see an ENT. then after the surgery we tried sinus rinses and he cant do them. i tried my best and...
  13. B

    sleep during ivs

    it really upsets me how bad my sons sleeping is when hes on iv. ugh the hospital is a nightmare. in those 4 or five days were there it caos. the shift changes and having to review everything all over again with the nurses. his machine beeping all the time. waiting for them to unhook him cause...
  14. B

    sleep during ivs

    it really upsets me how bad my sons sleeping is when hes on iv. ugh the hospital is a nightmare. in those 4 or five days were there it caos. the shift changes and having to review everything all over again with the nurses. his machine beeping all the time. waiting for them to unhook him cause...
  15. B

    CF documentary on Tlc Wednesday at 9pm(central)10pm (eastern)

    what is the title of the doc
  16. B

    CF documentary on Tlc Wednesday at 9pm(central)10pm (eastern)

    what is the title of the doc
  17. B

    Make airway clearance for your kids more fun and effective!

    i love the games aidan plays for his pft's. bowling. hot air baloon. bubbles. shes gots tons of them
  18. B

    Make airway clearance for your kids more fun and effective!

    i love the games aidan plays for his pft's. bowling. hot air baloon. bubbles. shes gots tons of them
  19. B

    Sinus/Nasal Issues

    we have had such a horrible time with Aidan and basicly chronic sinus infections for almost 2 years now 3 of the infections resulted in picc lines after oral failed. also had sinus surgery due to blockage. he does snore but its not bad its low and i dont think he does it every night. however he...
  20. B

    Sinus/Nasal Issues

    we have had such a horrible time with Aidan and basicly chronic sinus infections for almost 2 years now 3 of the infections resulted in picc lines after oral failed. also had sinus surgery due to blockage. he does snore but its not bad its low and i dont think he does it every night. however he...
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