21 Month Old

A

Aboveallislove

Super Moderator
Thanks Jenny. Prayers continuing...given clinical presentation and again borderline results I sure hope they do full cff screening panel!
 
A

age

Guest
I wish you the best and hope you get answers quickly. I know our test had to go to a lab in Ca( they due the full screen). They would not send it to that lab until after that initial screening( 30 something mutation test). They said it was expensive and that was the protocol I know it stinks im sorry. But you need to just remind yourself that you are a good mom and your doing everything you can to get and answer. I knew she had it by the salty taste on my lips after I would kiss her on the head. She was like a salt lick!
 
S

Super Man's Mommy

New member
So, my Little Super Man has been doing great the past two days... He is a totaly different child. Very weird, scary, and exciting all at the same time. He has NEVER gone TWO days in a row without coughing, wheezing, rattling, snot, ect! He has an appointment with the Pulmonologist on Tuesday (whom we are supposed to discuss the results to the 2ND SWEAT TEST) that he repeated because he was convinced the first was incorrect! If he sees how well he is doing he is going to tell me to take my full screening and get lost!!!! Any suggestions???
 
S

Super Man's Mommy

New member
Our appointment with the Pulmonologist was this morning. For someone who was convinced the 1st sweat test was incorrect, he sure has had a change of heart! He has diagnosed Aiden with CFTR Syndrome, in the mean time the doctor is waiting on insurance approvals. He will then order a full screening, and a CT scan for Bronchi Ectasis. If the CT scan shows what he is looking for he will then order a vest. When his mutations are found he will then confirm. :-/
 
You must log in or register to reply here.
Top