Recent content by lilismom

  1. L

    Trikafta Q&A, Experiences, etc.

    Hi all, Lili is 17. Really good lung function but does have some smaller airway blockage and sometime of mucus growth which was discovered last year. She also has diabetes which she is on long acting insulin for at the moment. Her endo dr thinks she will need to move to insulin with meals soon...
  2. L

    Lisa Greene's Husband Passed Away

    I'm so sorry to hear this. Lisa lives in the next town over from me, do you know if there is anyone organizing meals?
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    Exercise drink for someone with CFRD???

    yes they are flavored. The majority of the flavors have some kind of artificial sweetener which I try to avoid. The ones I get are gogi berry green tea and tangerine ginger. They come in a small tube with 16 tablets. Each tablet is for 16 ozs. of water. I see them at our kroger store so you...
  4. L

    Exercise drink for someone with CFRD???

    we use nuun tablets. I buy the ones labeled natural hydration. They are sweetened with Stevia.
  5. L

    rash from Enzymes?

    My daughter has had a rash on her genital area on and off for awhile. At one point it was strep but the last couple of cultures have been clean. It looks like it is being caused by urine, doesn't look like yeast. At clinic last week I mentioned it to her Dr and she thought 1 cause may be...
  6. L

    Jesse <3

    My heart hurts for you and your family Jane.
  7. L

    How many elementary kids take their own enzymes to school?

    My daughter is in 4th grade. Up until this year I was told it was district policy to have all medications given in the health room. The secretary gave them to her and for the most part it worked out pretty well. I decided this year that she needed to take more on responsibility so I got a...
  8. L

    Seattle Washington

    we live here too. I have a 9 year old daughter with cf. I've heard mixed things about the adult center at UW. The constant grey in the winter bothers me but I do like the mild winters and summers that aren't too hot.
  9. L

    Does Cf and Food Alleries go together?

    I wanted to follow up on this... Lili started a new digestive enzyme a month ago to deal with food intolerance she has. The enzyme is supposed to work differently than the pancreatic enzymes...it breaks food down into smaller bits in the stomach so it is easier to digest. Over the past month...
  10. L

    Does Cf and Food Alleries go together?

    I wanted to follow up on this... Lili started a new digestive enzyme a month ago to deal with food intolerance she has. The enzyme is supposed to work differently than the pancreatic enzymes...it breaks food down into smaller bits in the stomach so it is easier to digest. Over the past month...
  11. L

    Does Cf and Food Alleries go together?

    I just ordered the enzyme from her Drs office yesterday and it hasn't been delivered yet, I'll give you the details when I get it. It is a nutritional supplement so it's OTC.
  12. L

    Does Cf and Food Alleries go together?

    I just ordered the enzyme from her Drs office yesterday and it hasn't been delivered yet, I'll give you the details when I get it. It is a nutritional supplement so it's OTC.
  13. L

    Does Cf and Food Alleries go together?

    We just had Lili tested for food allergies and intolerance. Her Naturopath said their was no correlation between CF and true food allergies. Her one true allergy is Beef. The list of food intolerance's is huge: Wheat, eggs, chicken, rice, grapes, soy, oatmeal... he said some of these could be...
  14. L

    Does Cf and Food Alleries go together?

    We just had Lili tested for food allergies and intolerance. Her Naturopath said their was no correlation between CF and true food allergies. Her one true allergy is Beef. The list of food intolerance's is huge: Wheat, eggs, chicken, rice, grapes, soy, oatmeal... he said some of these could be...
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    Battery powered nebulizer

    We ended up renting a p lace that has a backup generator so we can use her regular compressor. We did decide to leave the bulky vest at home and will be doing manual cpt and flutter while we are on vacation.
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