I'm new at this. My daughter is 9 yrs old pancreas sufficient. Her mutation is R117h. For the past year we have been admitted into the hospital five times. The last three times have been within the last month. All the doctors keep tell us is this is the way it will be for us until the pancreas completely shuts down. We are now on Zen pep, miralax, and omeprazole. Nothing seems to help! Open to any suggestions. Worried MOM!
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Pancreatitis
- Thread starter Lak7
- Start date
I have a number of questions. You say that she has R117h but nothing about a second mutation. What kind of testing has she had?
Were all five hospital admissions been for pancreas issues?
Has she been diagnosed with Cystic Fibrosis and if so, is she being seen at an Approved Cystic Fibrosis Center by a Cystic Fibrosis Specialist?
Were all five hospital admissions been for pancreas issues?
Has she been diagnosed with Cystic Fibrosis and if so, is she being seen at an Approved Cystic Fibrosis Center by a Cystic Fibrosis Specialist?
Printer;bt612 said:I have a number of questions. You say that she has R117h but nothing about a second mutation. What kind of testing has she had?
Were all five hospital admissions been for pancreas issues?
Has she been diagnosed with Cystic Fibrosis and if so, is she being seen at an Approved Cystic Fibrosis Center by a Cystic Fibrosis Specialist?
I'm not sure of the second mutation. It was found in the newborn screening. Then a sweat test at age two at cf clinic Le Bonheur in Memphis, TN. Every time was and is for pancreatitis. The doctors had an MRCP ran today which showed showed no blockages in the ducts that it is the pancreas just trying to deteriorate.
There are almost 2000 known mutations, any two will cause Cystic Fibrosis. A newborn screening is ONLY for the most common 32 mutations. You do the math. Based upon her one known mutation and a history of pancreatitis, she should have a FULL CYSTIC FIBROSIS SEQUENCING. Her CF Specialist will order this.
Based upon my experience, the Doctors are correct. Over a few years the pancreas will deteriorate and the attacks will stop. Over a long period of time and slowly, she will become PI and require enzymes.
Have heart, I have been through all of this.
Bill
Based upon my experience, the Doctors are correct. Over a few years the pancreas will deteriorate and the attacks will stop. Over a long period of time and slowly, she will become PI and require enzymes.
Have heart, I have been through all of this.
Bill
Aboveallislove
Super Moderator
Have you asked the doctors to try kalydeco off label... Not sure if it might help with this, but it shows lung benefit for older patients ..
Hi,
My son is 6 yrs old. He has R117H 7T mutation also. He has had 2 episodes of pancreatitis last year and 3 since March18 of this year. He has had about 5 ultrasounds and a MRCP that shows no blockages and no gall stones. He is taking Zantac and that is it. The doctors have given me no explanation other than his CFTR re lated disorder(CF). They have not helped with telling me how to prevent this from happening again. I hate seeing him in pain. Have you gotten any answers??
My son is 6 yrs old. He has R117H 7T mutation also. He has had 2 episodes of pancreatitis last year and 3 since March18 of this year. He has had about 5 ultrasounds and a MRCP that shows no blockages and no gall stones. He is taking Zantac and that is it. The doctors have given me no explanation other than his CFTR re lated disorder(CF). They have not helped with telling me how to prevent this from happening again. I hate seeing him in pain. Have you gotten any answers??