holmfamily1992
New member
Hello,
This is for anyone who has gone through what we are right now. Back in December we were told that our son was negative for the delta508 gene. BUT what a carrier of R117H gene on the 5T and 7T. We received a phone call yesterday stating that he has an Atypical form of CF. Now my husband and I are on our way to be genetically tested as well.
My question is, If he has an Atypical form of CF what does this mean??? Will he be treated with the same meds as someone with typical CF? And when should they start this??? We understand what the differnce between typical and atypical is but I cant understand is why they havent started treatment. This boy is almost 10 and weighs 54 pounds. He has weighed this for a year now. His medicines that he is taking now seems to have platued. We are currently waiting for his doctor to call us back on that..
Any comments??
Tina
This is for anyone who has gone through what we are right now. Back in December we were told that our son was negative for the delta508 gene. BUT what a carrier of R117H gene on the 5T and 7T. We received a phone call yesterday stating that he has an Atypical form of CF. Now my husband and I are on our way to be genetically tested as well.
My question is, If he has an Atypical form of CF what does this mean??? Will he be treated with the same meds as someone with typical CF? And when should they start this??? We understand what the differnce between typical and atypical is but I cant understand is why they havent started treatment. This boy is almost 10 and weighs 54 pounds. He has weighed this for a year now. His medicines that he is taking now seems to have platued. We are currently waiting for his doctor to call us back on that..
Any comments??
Tina