mutation info

cherishthree

New member
Would any body have info on this mutation Ivs8 5t. Two of my children have two copies of this IVS8 5t/Ivs8 5t. At first they called it atypical Cf. But since have been put in the full Cf category. When we first started going to the clinic they said it would present mildly with no pancreas problems , most likely just sinus issues. But my youngest they recentelly put her on enzymes creon 10 and she has been hospitalized with mrsa and staph aureus in lungs. And she is off the charts with weight and height at 39 pounds and is almost 8 years old. My son who is 11 is fine weight wise just sinus like they said and mild lung disease. Both use the vest and take pulmozyme and albuteral 4 times aday. When i google two copies of this Ivs8 5t. They just show vans defrens issues? Just wondering what to expect with this mutation since only 1% of the population carries this it is hard to get info. Thanks for any help!!
 

cherishthree

New member
Would any body have info on this mutation Ivs8 5t. Two of my children have two copies of this IVS8 5t/Ivs8 5t. At first they called it atypical Cf. But since have been put in the full Cf category. When we first started going to the clinic they said it would present mildly with no pancreas problems , most likely just sinus issues. But my youngest they recentelly put her on enzymes creon 10 and she has been hospitalized with mrsa and staph aureus in lungs. And she is off the charts with weight and height at 39 pounds and is almost 8 years old. My son who is 11 is fine weight wise just sinus like they said and mild lung disease. Both use the vest and take pulmozyme and albuteral 4 times aday. When i google two copies of this Ivs8 5t. They just show vans defrens issues? Just wondering what to expect with this mutation since only 1% of the population carries this it is hard to get info. Thanks for any help!!
 

cherishthree

New member
Would any body have info on this mutation Ivs8 5t. Two of my children have two copies of this IVS8 5t/Ivs8 5t. At first they called it atypical Cf. But since have been put in the full Cf category. When we first started going to the clinic they said it would present mildly with no pancreas problems , most likely just sinus issues. But my youngest they recentelly put her on enzymes creon 10 and she has been hospitalized with mrsa and staph aureus in lungs. And she is off the charts with weight and height at 39 pounds and is almost 8 years old. My son who is 11 is fine weight wise just sinus like they said and mild lung disease. Both use the vest and take pulmozyme and albuteral 4 times aday. When i google two copies of this Ivs8 5t. They just show vans defrens issues? Just wondering what to expect with this mutation since only 1% of the population carries this it is hard to get info. Thanks for any help!!
 

cherishthree

New member
Would any body have info on this mutation Ivs8 5t. Two of my children have two copies of this IVS8 5t/Ivs8 5t. At first they called it atypical Cf. But since have been put in the full Cf category. When we first started going to the clinic they said it would present mildly with no pancreas problems , most likely just sinus issues. But my youngest they recentelly put her on enzymes creon 10 and she has been hospitalized with mrsa and staph aureus in lungs. And she is off the charts with weight and height at 39 pounds and is almost 8 years old. My son who is 11 is fine weight wise just sinus like they said and mild lung disease. Both use the vest and take pulmozyme and albuteral 4 times aday. When i google two copies of this Ivs8 5t. They just show vans defrens issues? Just wondering what to expect with this mutation since only 1% of the population carries this it is hard to get info. Thanks for any help!!
 

cherishthree

New member
Would any body have info on this mutation Ivs8 5t. Two of my children have two copies of this IVS8 5t/Ivs8 5t. At first they called it atypical Cf. But since have been put in the full Cf category. When we first started going to the clinic they said it would present mildly with no pancreas problems , most likely just sinus issues. But my youngest they recentelly put her on enzymes creon 10 and she has been hospitalized with mrsa and staph aureus in lungs. And she is off the charts with weight and height at 39 pounds and is almost 8 years old. My son who is 11 is fine weight wise just sinus like they said and mild lung disease. Both use the vest and take pulmozyme and albuteral 4 times aday. When i google two copies of this Ivs8 5t. They just show vans defrens issues? Just wondering what to expect with this mutation since only 1% of the population carries this it is hard to get info. Thanks for any help!!
 
Top