Cystic Fibrosis Forum (EXP)

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  1. M

    Have you read the book SixtyFive Roses?

    I bought it today. I am a bit scared to read it though. Honestly, I went to the bookstore and it was the only CF related book they had, so I bought it. I am going to order some others off of Amazon. I am wondering if anyone read it and what you thought of it. Is it hard to read (emotional)?
  2. M

    Has anyone tried The Specific Carbohydrate Diet (SCD)?

    <a target=_blank class=ftalternatingbarlinklarge href="http://www.amazon.com/gp/product/0969276818/ref=wl_it_dp?ie=UTF8&coliid=I3AGCRBKUCX8C7&colid=3N2K051EV75VO">Breaking the Vicious Cycle: Intestinal Health Through Diet</a> They are saying it is "The Grain-Free, Lactose-Free, Sugar-Free...
  3. M

    Sweat test numbers

    Can someone post some information about what sweat test numbers mean?
  4. M

    Have you or your child cultured Staphylococcus aureus?

    I got a call from the CF Clinic last night saying that my daughter cultured Staphylococcus aureus. I was told it is nothing to worry about and that it is the somthing they see often in CF'ers. I was told that many clinics don't treat it, but my clinic does. So they put her on an antibiotic...
  5. M

    What did your parents do right/wrong?

    My daughter is a newborn (about 10 weeks old). I want her to grow up happy, healthy, and knowing she is more than her illness. Do you have any advice for a parent with a child who has CF? What did your parents do right? What did your parents do wrong? What would be most important to you...
  6. M

    Does anyone have F508 and W1282x?

    These are the mutation my daughter has. I know that everyone is different and that 2 people with the same mutations will not have the same disease. With all that being said... I am still curious if there are any adults on here that have the same mutations. If yes, how are you doing?
  7. M

    Does your child cough?

    I have read that CF'ers cough alot. Dr. Warwick's literature even suggested that they should purposefully cough. My daughter is about 10 weeks old and I have noticed that she seems to cough more than seems 'normal'.
  8. M

    Books on Parenting?

    Do you have any suggestions for books I should read about parenting a child with CF (or chronic illness)?
  9. M

    Infant spitting up formula

    Emma (8 weeks old) has had some issues with spitting up ... like all babies do. But in the last week or two she has been spitting up much less. Except today! Today she has spit up 3 times! 2 of those times she was laying down in her bassinet and actually had formula come out her NOSE as well...
  10. M

    Questions about Enzymes

    Based on the genetic mutations my daughter has, the CF clinic said she would no doubt have pancreatic issues. She was started on enzymes at 8 days old. She is now 5 weeks old. Recently they tested her poop and she has pancreatic insufficiency. They told us it is exactly what they had...
  11. M

    Emma's CaringBridge Website

    I set up a website for my daughter, Emma. <a target=_blank class=ftalternatingbarlinklarge href="http://www.caringbridge.org/visit/erl.">http://www.caringbridge.org/visit/erl.</a>
  12. M

    Should parents be tested?

    We recently found out our newborn has CF. Should my husband and I be tested to see if we have CF or are just carriers? Is it important to know which parent gave her which mutation?
  13. M

    PTC 124 ?

    Does anyone have any information or links regarding PTC 124?
  14. M

    What if you get sick?

    What do you do when you get sick (a cold, etc) to keep your CF child from getting it?
  15. M

    Suggestions for a Mom of Newly diagnosed infant?

    Please share with me any suggestions you have for a mom of a newborn (born 12/5/07) who has been diagnosed with CF. What things do I need to know? What things are the most important to do? What do you wish someone would have told you when you found out your child had CF? A little about me: I...
  16. M

    Can someone give me information on these mutations (Delta F508 and w1282x)?

    My daughter is 24 days old. When she was 7 days old we received her newborn screening results and found that she has CF (Delta F508 and w1282x). She has not had the sweat test done yet. We will have it done in a few weeks because we were told that it can be difficult to collect in newborns...
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