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    Albuterol (2-4 x)
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    ADEK (1x M,W,F)
    Creon 12 (6 with meals and snacks)
    Vest (2-3x) 30 minutes
    Percussion (30 minutes)
    alpha lipoid acid (1x)
    singulair (1x)
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    azithromyicin (M, W, F)

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Still Struggling with Enzymes

Well, this is now day 9 of the new Creon enzymes.  Ugg.  I was so encouraged because the initial results seemed to be so much better than our last try.  However… as the week has pressed on and we have tried to return to more of her normal (dump olive oil on everything- high fat meals) she is struggling.  I am SOOOO frustrated.  I didn’t really enjoy biology but I really hate POOPOLOGY!!!!  (Please forgive me because I just need to vent for a minute.)  I am so sick of poop.  I am tired of thinking about how to make her stomach absorb more so she poops less, I am tired of counting how many times she has gone each day, I am especially tired of inspecting/analyzing every poop.  The other day I was frustrated because we were out and about and the urge hit Rachel.  She went to the bathroom (in her own stall because she is getting to be such a big girl at almost 5) and she called out her normal, “Mom, I am done!”, right as I heard the self-flushing toilet take away my evidence. It was kinda funny, but I was so annoyed that there was emotional energy attached to what “that” poop looked like. Argg!  Not to mention we have had a lot of stomach aches and bottoms hurting from the acid/oil coming through with every stool.  SOOOO tired!!!

Now I am done venting, and have to figure out what to do.  First, and always the most important…we need PRAYER!!  Wisdom to know where to look for the answers, and the energy to keep trudging through.  I spoke with the nutritionalist the other day for about 40 minutes, and unfortunately she didn’t have a lot of ideas.  She said we were at the max dose for enzymes (they dose weight and age), along with the max of prevacid (an acid reducer used to make the enzymes more effective).   The good news is that we are about 80% of where we need to be.  The bad news, 80% is just not enough for a person with CF.  The fight for weight and calories is intense when you are well so that, if you are able, you have a little reserve when you do get sick because we know another round of sickness is always right around the corner.

So now the question is how to get these Creon enzymes the rest of the way- 20% sounds like such a small number.   The problem is 20% is the difference between having 10 years or more cut from your already short life expectancy by not being able to keep the weight up.  Weight means you give your lungs the most calories to be able to fight off an infection.  SOOOOO…absorption…  I have heard and read that Tums has a protective coating that helps the calcium stay in tack making it better absorbed.  I think we may try it.  I am hoping this will get us where we need to be. Since we have the maximum amount of enzymes- we need them to become as efficient as possible.  Please pray with me that this will work.  We have only been at this process for a little over 6 weeks, but we are tired.  Rachel is tired.  But, we are so thankful that we have had good lung health through this so far.  God knows what we can handle and I am so grateful for that knowledge.  He holds us in the palm of His hand.

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2 Responses

  1. Tiffany,
    I am writiing as I head to camp with my own sweet daughter and am praying fervently for yours. My hear just hurts for you and your girl. The great news is that she is God’s girl, too and He has her in the palm of His mighty hand. I am praying for the poop. I am praying for absorbtion and I am PRAYING for a cure for your baby. I just love the mama bear instinct you have for your babies. I also cried for you on your last post about your mom. Such a heritage. I pray my kids will be able to say just a portion of what you can about your mom. Praying!! Jean

    • Thanks Jean, I appreciate your kind words and more importantly your prayers. God is good. I am glad that He has all the answers and that at times we must just endure and press onward. It would be fun to catch up with you sometime. Blessings to you.

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