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Forgot to add.. Yes my childrens dr.s looked into a Primary Ciliary Dyskinesia diagnosis but rulled it out based further testing and finally diagnosed my kids with Atypical CF due to "inconclusive testing" and positive CF phenotype..

I am sorry you are in this spot, it sounds like you have been through a lot. Did they test for Ciliary Dyskinesia ?? Based on what you are reporting, I would push to start CF treatments in the interim. Advantages of dx are being able to get the meds & treatments your child clearly needs. Good...

I am sorry you are in this spot, it sounds like you have been through a lot. Did they test for Ciliary Dyskinesia ?? Based on what you are reporting, I would push to start CF treatments in the interim. Advantages of dx are being able to get the meds & treatments your child clearly needs. Good...

I am sorry you are in this spot, it sounds like you have been through a lot. Did they test for Ciliary Dyskinesia ?? Based on what you are reporting, I would push to start CF treatments in the interim. Advantages of dx are being able to get the meds & treatments your child clearly needs. Good...

I am so sorry you are going through this! Our diagnosis has changed several times and all that does to me is add a whole lot of confusion and gives me a "false" sense of security. I am trying really hard to get "atypical cf" to become an "official" diagnosis to account for people like us. I am...

I am so sorry you are going through this! Our diagnosis has changed several times and all that does to me is add a whole lot of confusion and gives me a "false" sense of security. I am trying really hard to get "atypical cf" to become an "official" diagnosis to account for people like us. I am...

I am so sorry you are going through this! Our diagnosis has changed several times and all that does to me is add a whole lot of confusion and gives me a "false" sense of security. I am trying really hard to get "atypical cf" to become an "official" diagnosis to account for people like us. I am...

Thank you so much for the replies.. Harriette I have to say you are such an amazingly valuable asset to this forum!! As some of you know three of my kids have been diagnosed with atypical cf after almost 11 years of pure agony. My story is way too long to rewrite but it is one that has left me...

Thank you so much for the replies.. Harriette I have to say you are such an amazingly valuable asset to this forum!! As some of you know three of my kids have been diagnosed with atypical cf after almost 11 years of pure agony. My story is way too long to rewrite but it is one that has left me...

Thank you so much for the replies.. Harriette I have to say you are such an amazingly valuable asset to this forum!! As some of you know three of my kids have been diagnosed with atypical cf after almost 11 years of pure agony. My story is way too long to rewrite but it is one that has left me...

I need as much help as I can get on this topic. I need to formulate a list of questions about atypical cf. Please take a minute to post some questions you have about atypical cf that you believe would be helpful to have answered to educate anyone interested in this topic. Thanks in advance for...

I need as much help as I can get on this topic. I need to formulate a list of questions about atypical cf. Please take a minute to post some questions you have about atypical cf that you believe would be helpful to have answered to educate anyone interested in this topic. Thanks in advance for...

I need as much help as I can get on this topic. I need to formulate a list of questions about atypical cf. Please take a minute to post some questions you have about atypical cf that you believe would be helpful to have answered to educate anyone interested in this topic. Thanks in advance for...

I don't know where you are located but Hopkins, as mentioned, is great in dealing with the atypical presentations. This was my life until we finally got an atypical dx and my kids are now doing amazing. There is a huge grey area with this disease that we are just learning about..

I don't know where you are located but Hopkins, as mentioned, is great in dealing with the atypical presentations. This was my life until we finally got an atypical dx and my kids are now doing amazing. There is a huge grey area with this disease that we are just learning about..

I don't know where you are located but Hopkins, as mentioned, is great in dealing with the atypical presentations. This was my life until we finally got an atypical dx and my kids are now doing amazing. There is a huge grey area with this disease that we are just learning about..

My daughter has cultured it a few times while also being symptomatic. One of my boys has cultured it while he was coughing. I think they were both on antibiotics when they cultured it. Their old dr.s policy was to treat only if symptomatic but their new dr's opinion is to treat regardless. She...

My daughter has cultured it a few times while also being symptomatic. One of my boys has cultured it while he was coughing. I think they were both on antibiotics when they cultured it. Their old dr.s policy was to treat only if symptomatic but their new dr's opinion is to treat regardless. She...

My daughter has cultured it a few times while also being symptomatic. One of my boys has cultured it while he was coughing. I think they were both on antibiotics when they cultured it. Their old dr.s policy was to treat only if symptomatic but their new dr's opinion is to treat regardless. She...

It has been two years since three of my kids were diagnosed with Atypical CF and (knock on wood) they are doing great. We still have our issues of course but now we know how to treat them. Our road has been long and scary but we have survived. I have decided to turn anger and self pity into...