Cystic Fibrosis? — The Bump
Special Needs

Cystic Fibrosis?

My cousin will be having a baby in 5 wks. with Cystic Fibrosis (so she's told).

I sometimes watch her DD1 on weekends, and I'm told when the baby gets to be a few months old,  I'll be watching her also (another girl!).

Can anyone tell me what kind of special care is involved with this condition?  I have seen info online about the condition itself, but not much about caring for a child with it.

TIA!

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Re: Cystic Fibrosis?

  • It really depends on the child.  My LO is 16 months old and was diagnosed at birth.  I work full-time and my SIL watches LO.  The only special things she has to do is a nebulizer treatment once a day (we do another one at night) and feed him with his feeding tube (super easy, once you get over the initial anxiety).

    The feeding tube is partially due to CF & partially due to severe allergies, we're not sure which is more to blame.  He also gets medicine when he eats - reflux meds, motility meds & pancreatic enzymes.  

    Beyond that, he's a normal kid. 

    That said, she may not have any special needs for quite some time, just depends on how she gains weight, etc.

    Buy some hand sanitizer, keep your hands clean & keep her hands clean.  Germs are the enemy of the little CFer.

     

    Baby Birthday Ticker Ticker Emergency ileostomy 11/28/10, CF dx on 12/3/10 and ileostomy takedown 1/24/11, feeding tube placed 7/1/11...still going strong! Little one lost 5w5d, 5/27/2012. CP 8/26/2012
  • Thank you for your response.

    What you describe, I can totally handle.  I'm only a bit worried about the germs part... I'll have two germy toddlers to keep away from the infant! ACK!

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  • image BostonKisses2:

    Your cousin will learn how to do all of the therapies and give the meds, and she in turn can teach you.  Since you'll be watching the baby, it probably wouldn't hurt to go to a clinic visit or 2 so you can ask questions and learn how to do everything to care for the LO's needs.


    This is an excellent suggestion.  Thank you!!

     

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