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  1. P

    A WWYD

    Hi, I haven't posted here recently, but when I saw that your child has the S1235R mutation, thought I would reply.  My oldest ds, now 17, also has this mutation and at his last pulm appt the Dr. said CRMS is what they are calling it.   He is also PI and also has a positive sweat test now.  When...
  2. P

    A WWYD

    Hi, I haven't posted here recently, but when I saw that your child has the S1235R mutation, thought I would reply. My oldest ds, now 17, also has this mutation and at his last pulm appt the Dr. said CRMS is what they are calling it. He is also PI and also has a positive sweat test now. When he...
  3. P

    A WWYD

    Hi, I haven't posted here recently, but when I saw that your child has the S1235R mutation, thought I would reply. My oldest ds, now 17, also has this mutation and at his last pulm appt the Dr. said CRMS is what they are calling it. He is also PI and also has a positive sweat test now. When he...
  4. P

    steroid side effect or something else

    Last year ds was on high dose pred for severe throat swelling caused by mono and his face was red and flushed looking after a couple of days. When he went back for his follow up the doctor said it was high blood pressure caused from the steroids but that since he was young with no heart...
  5. P

    steroid side effect or something else

    Last year ds was on high dose pred for severe throat swelling caused by mono and his face was red and flushed looking after a couple of days. When he went back for his follow up the doctor said it was high blood pressure caused from the steroids but that since he was young with no heart...
  6. P

    steroid side effect or something else

    Last year ds was on high dose pred for severe throat swelling caused by mono and his face was red and flushed looking after a couple of days. When he went back for his follow up the doctor said it was high blood pressure caused from the steroids but that since he was young with no heart...
  7. P

    Gallbladder Problems

    Thanks everyone. Ds hasn't been on the Actigall very long. He had an ultrasound and HIDA scan the same day. The nurse said the ultrasound was ok, no gallstones or blockages but the HIDA scan showed function was only 24%. He has had stomach pain for a long time so I am concerned that his...
  8. P

    Gallbladder Problems

    Thanks everyone. Ds hasn't been on the Actigall very long. He had an ultrasound and HIDA scan the same day. The nurse said the ultrasound was ok, no gallstones or blockages but the HIDA scan showed function was only 24%. He has had stomach pain for a long time so I am concerned that his...
  9. P

    Gallbladder Problems

    Thanks everyone. Ds hasn't been on the Actigall very long. He had an ultrasound and HIDA scan the same day. The nurse said the ultrasound was ok, no gallstones or blockages but the HIDA scan showed function was only 24%. He has had stomach pain for a long time so I am concerned that his...
  10. P

    Gallbladder Problems

    We just recently found out 12 yo ds's gallbladder is only functioning at 24%. Nurse called in a prescription for Actigall and said they want to see if this will jumpstart his gallbladder. They also want him to follow a low fat diet to see if that will help. He has a follow up appointment at...
  11. P

    Gallbladder Problems

    We just recently found out 12 yo ds's gallbladder is only functioning at 24%. Nurse called in a prescription for Actigall and said they want to see if this will jumpstart his gallbladder. They also want him to follow a low fat diet to see if that will help. He has a follow up appointment at...
  12. P

    Gallbladder Problems

    We just recently found out 12 yo ds's gallbladder is only functioning at 24%. Nurse called in a prescription for Actigall and said they want to see if this will jumpstart his gallbladder. They also want him to follow a low fat diet to see if that will help. He has a follow up appointment at...
  13. P

    Preventative measures for lung health

    Hi Chris, not sure where you are located but what you're saying sounds very similar to what we have been told in regards to our ds 16. He has seen 2 cf docs that are the directors of 2 different cf clinics in our state. He only has one known mutation but has positive sweat test. He is...
  14. P

    Preventative measures for lung health

    Hi Chris, not sure where you are located but what you're saying sounds very similar to what we have been told in regards to our ds 16. He has seen 2 cf docs that are the directors of 2 different cf clinics in our state. He only has one known mutation but has positive sweat test. He is...
  15. P

    Preventative measures for lung health

    Hi Chris, not sure where you are located but what you're saying sounds very similar to what we have been told in regards to our ds 16. He has seen 2 cf docs that are the directors of 2 different cf clinics in our state. He only has one known mutation but has positive sweat test. He is...
  16. P

    S1235R

    The Dr. who recommended not getting a cf diagnoses gave the reasons of impact on health and life insurance and impact on family and employment. The Dr. who suggested having the nasal potential difference test said that if it is positive there would be some things such as the military that he...
  17. P

    S1235R

    The Dr. who recommended not getting a cf diagnoses gave the reasons of impact on health and life insurance and impact on family and employment. The Dr. who suggested having the nasal potential difference test said that if it is positive there would be some things such as the military that he...
  18. P

    S1235R

    The Dr. who recommended not getting a cf diagnoses gave the reasons of impact on health and life insurance and impact on family and employment. <br /> <br />The Dr. who suggested having the nasal potential difference test said that if it is positive there would be some things such as the...
  19. P

    S1235R

    Hi, just saw this thread. S1235R is the only known mutation my 16 year old ds has. He has moderate PI, asthma and allergies. We are trying to get him into a study for nasal potential difference testing as we were told this is the gold standard for atypical cf. Two different cf dr.'s have...
  20. P

    S1235R

    Hi, just saw this thread. S1235R is the only known mutation my 16 year old ds has. He has moderate PI, asthma and allergies. We are trying to get him into a study for nasal potential difference testing as we were told this is the gold standard for atypical cf. Two different cf dr.'s have...
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