I am new to all of this--posted a message as a reply, but not sure I am doing this right. I guess I will get the hang of it. I have to, because I really need the support.
Our three month old son was diagnosed this week with CF via a sweat test. I don't know the exact mutations yet; we see the genetics dr. on Thurs. The CF specialist that we saw says she expects we will find a full mutation--whatever that means. No one else in our family has CF and in fact most of our family and friends do not even know what it is.
We have started on enzymes and breathing treatments. I guess my first question would be: how long after beginning treatments can we expect to see results? He is having less bowel movements already (5-6 per day as opposed to 12-14) and he does seem to be breathing a little easier (we were transferred by ambulance from our local hospital to a university hospital due to respiratory distress and that is where he was diagnosed). He is so small though--only 8 pounds and so far off the growth curve.
I am so scared and overwhelmed and I feel really alone right now. I appreciate all of the posts that I have read. It gives me alot of hope. I check this site daily--it feels like my new best friend. I just feel like there is noone in my world right now who can understand what I am going through, so I need to reach out for support and I just thank you for being there.
Angela,
mommy to Luke, 3 mo. , just diagnosed
Our three month old son was diagnosed this week with CF via a sweat test. I don't know the exact mutations yet; we see the genetics dr. on Thurs. The CF specialist that we saw says she expects we will find a full mutation--whatever that means. No one else in our family has CF and in fact most of our family and friends do not even know what it is.
We have started on enzymes and breathing treatments. I guess my first question would be: how long after beginning treatments can we expect to see results? He is having less bowel movements already (5-6 per day as opposed to 12-14) and he does seem to be breathing a little easier (we were transferred by ambulance from our local hospital to a university hospital due to respiratory distress and that is where he was diagnosed). He is so small though--only 8 pounds and so far off the growth curve.
I am so scared and overwhelmed and I feel really alone right now. I appreciate all of the posts that I have read. It gives me alot of hope. I check this site daily--it feels like my new best friend. I just feel like there is noone in my world right now who can understand what I am going through, so I need to reach out for support and I just thank you for being there.
Angela,
mommy to Luke, 3 mo. , just diagnosed