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  1. K


    Such kind words from both of you. I hope both your parents get to read them.
  2. K

    NAC vitamins vs Mucinex?

    I have never heard of Mucinex for vitamins. My daughter takes Mucinex for cold symptoms. She takes Aquadek for vitamins.
  3. K

    Do you have ABPA?

    Dr Finklea is more digestive then lungs. Dr Jain is the director and focuses on lungs. She is great at the big picture. She also is open to new ideas and input. If you suggest something she is open to trying things. We love her.
  4. K

    Do you have ABPA?

    After losing > 40% of my lung function, I'm fed up. It's starting to affect my psyche because I feel like my health is just slowly slipping away and I get sad and frustrated a lot. Has your daughter had a large decrease in her PFTs as well? In December last year her PFT's were in the 60's...
  5. K

    Do you have ABPA?

    My daughter also goes to UT Southwestern in Dallas. She sees Dr Jain. Dr Jain was struggling to understand what was going on. My daughter was an outlier. Sounds a lot like your symptoms. There are a few she does not have like the bloody cough or mucous plug. We had to start IGG infusions...
  6. K

    Do you have ABPA?

    aspergillus My daughter has low IGE. We learned through an environmental doctor. The doctor did a test for aspergillus. He did a test with different strengths under her skin. At first no response. After 24 hours she started to have a reaction. As time progressed she got worse. By 48...
  7. K

    Running shoe advice (somewhat off-topic, yet on topic ;) )

    I like Mizuno. I tried Brooks but was not a fan. My daughter has Adidas. I cannot do Nike because they hurt the top of my feet. Each person is different. I agree with a running store. One that has lots of choices. A good running store will look at your walk, stance, and other factors to...
  8. K

    Df508 & m470v / 5t / 12tg

    m470v My daughter also has m470v. She is Pancreatic insufficient. She has lots of lung issues. SI only know one of her genes but they doctor said the other is in the gray area. My daughter has gradually declined. She is now 19. Her baseline for PFt is 81. Lower is a lot lower. My...
  9. K

    12 year old just diagnosed

    The amount of enzyme is based on each patient. My daughter takes 36,000 creon. She takes 3 with meals depending on the amount of fat and 2 with snack. IF very fatty the meal she takes 4. My daughter has Severe Pancreatic insufficiency. My daughter was diagnosed at 18. Due to nonclassical...
  10. K

    Rare Mutations Should I Bother with a Sweat Test?by: anjanetteopal on August 31, 2016

    My daughter has one mutation that is labeled non-cf causing. The other mutation we have been told is in the gray area. We have not been told what it is. When my daughter was five she had a cough. This was the first time we were sent for a sweat test. At the time we were told that the sweat...