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Thread: Drinking water

  1. #1
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    Living with a newborn with a positive crms result

    Hello. My 5 week old son was recently diagnosed with crms. This question may belong in a different area, but not sure where to post. I want to avoid pseudomonas infection and the Dr mentioned standing water. I read that while drinking tap water is safe, standing tap water may not be. I am concerned about the use of a Brita pitcher to mix with his formula since the water is standing water. Does anyone have any experience with this issue?

    Does anyone have any guidance on putting their new baby in daycare? Our Dr said it was fine, but it makes me a little uncomfortable given the fact that he has two mutations.

    Needless to say, I'm shocked by this diagnosis as I was tested prentally and was negative. However, I didnt realize they only tested the most common mutations. I have a rare mutation and as of now, my son's sweat test is normal, but would still like to be cautious. Im trying to balance my fear of him obtaining pseudomonas or other cf conditions with him living a normal life.

    If anyone has any info on using pitchers of water, that would be a great. It's a small issue, but trying to get some sense of doing what's right for this little guy.


    Thanks!
    Last edited by jsg; 05-18-2017 at 06:58 PM.

  2. #2
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    We used regular tap water at home for formula and if we travelled I either used premixed formula or bottled water. We've never used filtered water pitchers.

    Our child was in daycare. We figured eventually he would be going to school. Our doctor's only concern was that there was separation between babies and the germy toddlers. He also stressed getting flu shots as well as anyone (family) that he spent a lot of time with. He started at a daycare center at 3 months old. We were VERY comfortable with their procedures --- sanitizing toys, surfaces, enforcing their sick policies and keeping us informed if there was anything going around the daycare. He did need enzymes and he was also on a higher calorie formula (more powder to water ratio). He was probably one of the healthiest kids there. He had a few colds/sinus issues and a couple ear infections.

    I can't tell you anything about CRMS, hopefully someone else has a better handle on the concept because we were told that two mutations = CF, so I struggle with that concept.
    Parent to a child wcf double delta f508

  3. #3
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    Hi there!

    I have a child with a CRMS diagnosis. Do you mind sharing what mutations your child has?

  4. #4
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    Quote Originally Posted by emason View Post
    Hi there!

    I have a child with a CRMS diagnosis. Do you mind sharing what mutations your child has?
    what is CRMS? My ND told me to pour tap water into an open container pitcher and let stand 24 hours. this is how the chlorine leaves the water. i do this daily and then drink the water.
    ~ Simba15
    56 year old, diagnosed at age 50. Blessed to still be here!

  5. #5
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    CRMS is essentially a gray diagnosis given when not all criteria is met for a CF diagnosis yet there is cause to still monitor. Most of the time children with a CRMS diagnosis have a positive newborn screening which leads to further investigation. And usually they have a disease causing mutation paired with a mutation of variable clinical consequence and borderline to negative sweat values. These children are monitored through CF clinic and watched for signs of cystic fibrosis but they are not diagnosed with CF until/unless they have a positive sweat value and/or clinical presentation of disease.

  6. #6
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    Quote Originally Posted by emason View Post
    CRMS is essentially a gray diagnosis given when not all criteria is met for a CF diagnosis yet there is cause to still monitor. Most of the time children with a CRMS diagnosis have a positive newborn screening which leads to further investigation. And usually they have a disease causing mutation paired with a mutation of variable clinical consequence and borderline to negative sweat values. These children are monitored through CF clinic and watched for signs of cystic fibrosis but they are not diagnosed with CF until/unless they have a positive sweat value and/or clinical presentation of disease.
    Thanks. I have CF and drink water as described above. Never had a problem. Not sure why I would. CONFUSED.
    ~ Simba15
    56 year old, diagnosed at age 50. Blessed to still be here!

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