Cystic Fibrosis Forum (EXP)

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  1. T

    Port Accessed and Shower questions

    Jennifer, Micah is notorious for ripping dressings OFF. Yes, he deaccesses himself, which I would prefer he do with a port than a PICC. We actually ran out of dressing changes this last time. I called the home health agency and demanded more supplies. They got ALL huffy, claimed I was...
  2. T

    what all do you do with a port/ types on what to do

    We have a son with Hemophilia who has had a port for years now. We don't do anything special, except he has to have labs drawn from the port if he runs a fever. He only runs a fever high enough to have to even think about it 1-2 times per year. He loves to just not think about it at all...
  3. T

    what all do you do with a port/ types on what to do

    We have a son with Hemophilia who has had a port for years now. We don't do anything special, except he has to have labs drawn from the port if he runs a fever. He only runs a fever high enough to have to even think about it 1-2 times per year. He loves to just not think about it at all...
  4. T

    what all do you do with a port/ types on what to do

    We have a son with Hemophilia who has had a port for years now. We don't do anything special, except he has to have labs drawn from the port if he runs a fever. He only runs a fever high enough to have to even think about it 1-2 times per year. He loves to just not think about it at all...
  5. T

    when your child finds out the median age

    Micah is too compromised by low IQ and Autism to understand death at all. So, it's really not an issue for him. However, his siblings have to grapple with what this means. I haven't directly told them. Basically, I answer their questions honestly when they come, and I don't seek out adding...
  6. T

    when your child finds out the median age

    Micah is too compromised by low IQ and Autism to understand death at all. So, it's really not an issue for him. However, his siblings have to grapple with what this means. I haven't directly told them. Basically, I answer their questions honestly when they come, and I don't seek out adding...
  7. T

    when your child finds out the median age

    Micah is too compromised by low IQ and Autism to understand death at all. So, it's really not an issue for him. However, his siblings have to grapple with what this means. I haven't directly told them. Basically, I answer their questions honestly when they come, and I don't seek out adding...
  8. T

    First Time PICC line

    Prior to his Port placement this summer, Micah had to always have PICCs for IV meds. His viens were too fragile and difficult to stick. It was impossible to access him peripherally and maintain the line patent for the duration of treatment. Additionally, because Micah has significant Autism...
  9. T

    First Time PICC line

    Prior to his Port placement this summer, Micah had to always have PICCs for IV meds. His viens were too fragile and difficult to stick. It was impossible to access him peripherally and maintain the line patent for the duration of treatment. Additionally, because Micah has significant Autism...
  10. T

    First Time PICC line

    Prior to his Port placement this summer, Micah had to always have PICCs for IV meds. His viens were too fragile and difficult to stick. It was impossible to access him peripherally and maintain the line patent for the duration of treatment. Additionally, because Micah has significant Autism...
  11. T

    Opening a can o' worms

    <P>I am eternally grateful for new diagnosis and treatment options that allow for adults with CF to have new eyes look at their disease, diagnose and finally treat them.  As an adult diagnosed with asthma at age 33, I understand what it is like to have pieces to a long-standing, long-suffering...
  12. T

    Opening a can o' worms

    <P>I am eternally grateful for new diagnosis and treatment options that allow for adults with CF to have new eyes look at their disease, diagnose and finally treat them. As an adult diagnosed with asthma at age 33, I understand what it is like to have pieces to a long-standing, long-suffering...
  13. T

    Opening a can o' worms

    <P><BR>I am eternally grateful for new diagnosis and treatment options that allow for adults with CF to have new eyes look at their disease, diagnose and finally treat them. As an adult diagnosed with asthma at age 33, I understand what it is like to have pieces to a long-standing...
  14. T

    IV Bottle

    I've had the best luck with using leg warmers to hold the balls or bottles. I've only once at the pharmacy want ot do anything BUT the balls/bottles. I won't use an actual pump for home IV meds. It's too difficult on M to have to drag around a pump like that. I just ask when home health is...
  15. T

    IV Bottle

    I've had the best luck with using leg warmers to hold the balls or bottles. I've only once at the pharmacy want ot do anything BUT the balls/bottles. I won't use an actual pump for home IV meds. It's too difficult on M to have to drag around a pump like that. I just ask when home health is...
  16. T

    IV Bottle

    I've had the best luck with using leg warmers to hold the balls or bottles. I've only once at the pharmacy want ot do anything BUT the balls/bottles. I won't use an actual pump for home IV meds. It's too difficult on M to have to drag around a pump like that. I just ask when home health is...
  17. T

    Med's-Miscarriage

    <P>Hormonal birth control can cause miscarriages.  The warning on the package specifically states to stop taking birth control if you have any suspicion that you might be pregnant, for this reason.</P> <P> </P> <P>I can't imagine that Creon would contribute to misccarriage, and the other meds...
  18. T

    Med's-Miscarriage

    <P>Hormonal birth control can cause miscarriages. The warning on the package specifically states to stop taking birth control if you have any suspicion that you might be pregnant, for this reason.</P> <P></P> <P>I can't imagine that Creon would contribute to misccarriage, and the other meds you...
  19. T

    Med's-Miscarriage

    <P><BR>Hormonal birth control can cause miscarriages. The warning on the package specifically states to stop taking birth control if you have any suspicion that you might be pregnant, for this reason.</P> <P></P> <P>I can't imagine that Creon would contribute to misccarriage, and the other meds...
  20. T

    How long do enzymes last?

    <P>We do a full IEP process due to a full host of issues, CF being only one of them.  It has been repeatedly explained to me that if your doctor fills out the paperwork, then legally the teacher *can* keep and distribute the enzymes.  It comes down to the comfort of the individual teacher.  The...
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