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    Air Purifiers (HEPA)

    Hi, We use them throughout the house 24/7 and they definitely help. I have Vornados and a Winix; there are probably new models out since we got these. HTH. Kathy
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    What do you do to discourage pseudomonas while keeping your child happily "normal"?

    From the point in time after IVs did not eradicate pseudo, I addressed the environmental exposure more seriously. He stopped taking baths, no tap, fountain or cooler water and drinks only purified water. More physical activity, disposable nebs, more airway clearance. He has an IEP and a...
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    What do you do to discourage pseudomonas while keeping your child happily "normal"?

    Hi there, Lisa - Curious about the indoor pool rule - if it is properly maintained, is there still more risk with this? For the original poster, my son was diagnosed with CF at the age of 8 and he is 14 now. He cultured staph aureus from day 1. At the age of 10, he cultured pseudomonas...
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    Running

    Hi, It kind of depends on what your baseline is at the moment, in terms of starting up. If you have medicaid or a decent HMO, your pediatrician can write for a PT evaluation. The therapist will determine your overall fitness and can take it from there, in terms of writing up a program.
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    Insurance Policy Cancelled

    Hi there, With the move to expand Medicaid (HMO) programs, depending on what State you live in, this may have been the catalyst; it has been an administrative nightmare. I found out I no longer had coverage when I tried to get a much needed prescription filled. Thankfully, I had saved a few...
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    Is really cold weather bad for cf'ers

    Extreme cold weather can have an effect on the lungs; you don't necessarily see immediate evidence - think of secondhand smoke. Using a scarf or partial face mask around the nose and mouth can help to protect the lungs from arctic air.
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    Exercise program at school

    No, that's not true. There is a medical necessity piece to this for CF; also, the legal argument becomes about progress educationally and with an IEP that has included PT, OT, adaptive gym, etc. over the years, it all becomes "education." One obstacle is that the pulmonologist (CF accredited...
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    Exercise program at school

    Hi all, Can anyone share about their success with implementing a school based exercise program (PT, gym, etc.) that AT LEAST fulfills 30 of the 60 minute daily requirement of strenuous exercise that is currently recommended by the CFF? My son has had an IEP for years now and long story short, I...
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    Cutting

    Hi there, So sorry to hear about this; not knowing her age, history, etc., but CF IS very challenging to deal with. Most importantly - have you made your house "safe?" It is imperative that you do this and not minimize and pretend to know what she's thinking. There may have been a traumatic...
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    Exercise program at school

    He is in a private placement for children with disabilities; there are no extracurricular opportunities. They do have a walking program as well, but it is not consistent and averages 20 minutes. The current medical recommendation is for one hour per day, 30 minutes of that at school; that's...
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    Exercise program at school

    Hi all, Can anyone share about their success with implementing a school based exercise program (PT, gym, etc.) that AT LEAST fulfills 30 of the 60 minute daily requirement of strenuous exercise that is currently recommended by the CFF? My son has had an IEP for years now and long story short, I...
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    uhg! headaches!!!

    You know, I have headaches too! Try taking advil or tylenol if you have another headache; they're quite good for almost any kind of pain.
  13. D

    uhg! headaches!!!

    You know, I have headaches too! Try taking advil or tylenol if you have another headache; they're quite good for almost any kind of pain.
  14. D

    uhg! headaches!!!

    You know, I have headaches too! Try taking advil or tylenol if you have another headache; they're quite good for almost any kind of pain.
  15. D

    uhg! headaches!!!

    You know, I have headaches too! Try taking advil or tylenol if you have another headache; they're quite good for almost any kind of pain.
  16. D

    uhg! headaches!!!

    You know, I have headaches too! <br />Try taking advil or tylenol if you have another headache; <br />they're quite good for almost any kind of pain. <br /> <br />
  17. D

    Welcome Ambry Genetics

    is there a simple explanation of a homozygous vs. heterozygous mutation? i read some info recently from merck and it conflicted with other info. thanks.
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