check with a CF specialist before stopping ivacaftor
I am not a medical doctor but I have a daughter with a residual function mutation and have read EVERYTHING for the past 11 years about ivacaftor. I would caution you not to stop ivacaftor without getting an opinion from an informed CF...
pancreatitis?
I am sorry that your son hasn't been feeling well. I have a daughter with CF who was not diagnosed until a couple of years ago after a multiple bouts of pancreatitis starting at age 8. She has all the symptoms you mention. You might ask your son's doctor to test him for that...
I know that it has been a long time since your post! Your son must be 8 years old now and I am wondering, if you see this or there are others out there with children with this mutation combination, how is your child now? I have an eleven year daughter with these exact mutations. In many...
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