Thursday, January 7, 2010

New News Is Good News

If I didn't know any better, I'd think Santa Claus brought Lucy a snotty nose and cough for Christmas along with her new kitchen. Christmas night was when Lucy's nose started flowing uncontrollably. She had the kind of nose run that needed to be wiped every fifteen seconds. The kind of nose run that makes a nose so chapped you want to smother it in Vaseline. The kind of nose run that gives a toddler a horrible cough and wheezing after a week of mucus torment. Despite the mucus monster that has invaded her body, she is still the spunky toddler that I know and love. I don't think anything can get her down!

I took Lucy to see her pulmonologist on Tuesday to get a sputum culture taken and get an antibiotic prescription to get rid of this coughing and wheezing. Lucy is taking a two week course of Bactrim, which has successfully fought her infections in the past with little or no side effects. She has had very little weight gain so we have raised her digestive enzyme intake from six PancreaCarb MS4's to seven with meals. This is the maximum amount of enzymes she can take based on her weight (25 pounds.)

The biggest excitement (other than her upcoming birthday) is her new vest! Lucy has been using the wrap and it hasn't really had a huge impact on mucus production from her lungs. We finally got a regular child's vest that covers her shoulders. It looks like a life jacket. She really likes wearing it, and coming soon in February, we will be getting another new vest coming out on the market that is bright pink and is machine washable. Yippee!

When we first got the vest and the guy told me that the vest/wrap is not washable, I almost fell off my couch. We, as CF moms, spend our daily lives trying to keep our child free of infection by disinfecting everything and boiling nebulizers after every use and we can't even wash these vests that they wear multiple times a day? What the heck? In one month, Lucy will be getting this new vest and I will be able to disinfect it to my heart's content.

Here it is...


  1. As far as I know, enzyme dosages are just a recommendation, and can be exceeded if needed. I'm on double of Ultrase MT20 that I should be for my weight... but if I were on the dose that CFF recommends, I'd be dead.

  2. I was told that taking too many enzymes MAY cause constipation and irritation to the intestinal lining over prolonged periods of "over-taking." We wouldn't want that for Lucy since she has already had many occurances of rectal prolapse and other digestive issues. I know every CFer's body is different and getting enzyme dosages just right can take a while. We are getting there with Lucy.

  3. When I was little my Mom gave me a my sister mineral oil to help ease digestion and keep everything running smoothly, so to speak...ick.

    Since it's natural, it doesn't cause diarhea or anything like other laxativs might, but you can keep your little Lucy on the higher amt of enzymes so she is absorbing well.

    Just a thought.

    CF docs never recommend the natural stuff anymore, it seems, but it was more normal when I was little.


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