For Parents Who Children Have Cystic Fibrosis?
Tuesday, July 13th, 2010 at
6:48 am
Keke asked:
What is a normal day like for you? I know what it is like for the child, but I want to know what it is like for the parent.
Also, are there any medications your child takes to help relieve some of the symptoms?
Thanks a lot…this is for a project
Tagged with: Cystic Fibrosis • Medications • Thanks A Lot
Filed under: Cystic Fibrosis
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I’m not a parent, but I help take care of my ten-year old cousin who has CF. A typical day when I have him (and he has to go to school) we wake up around 5:45, I have to disconnect his feeding tube, put on his vest and do his neubulized treatments, have him take his meds, feed him breakfast, give him enzymes, force him to drink his boost (he hates the stuff). Then we pack up and get in the car to go to school. Later he gets off the bus, he eats again, gets more enzymes. When he’s sick we do another round of TOBI and the vest again (the pills he takes when sick have to be taken at certain times because otherwise they interfere w/each other). Then later he does the vest and neubelized treatments again….
Jonathan takes TOBI for lung infections…
He takes Pulmozine for oxygen deprivation…neubulized
Prevacid- for Acid Refulx
Albuterol- for chest tightness/difficulty breathing..neubulized
Advair- for asthma
Enzymes- for digestion
There are several other pills he takes…but they’re not proven to help (CF clinic is watching to see if they help though)