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That is incredible. Congratulations to you!! You are a great role model and I hope that my son will be that active and determined. Do you mind me asking how old you are?
Best wishes!
Shelly
I believe both of his are DF508. The most common. (correct me if I'm wrong) We went through Ambry. At the first hospital that we went to that was NOT a CF clinic, the lab tech told us how all of the tests that she had ever done, came back negative. Now I assume that they are doing something...
I have a lot of respect also for CFF. We are doing as much fundraising as possible for them. I had a reporter ask why we didn't keep the money we raised for my son's medical expenses and my thoughts were that at this moment, money for research will benefit us more to find that cure or anything...
My son had maybe or 6 sweat tests--all negative. I followed my gut and insisted on more testing in which they did the blood test which was positive. His health and growth are so much better now. Our first test was not at a CF center. At the time I didn't know the difference. So follow your...
Like we all know, every situation and every child is different. In our situation, my husband had a job transfer just weeks after the diagnosis. My son had been in daycare, he was 18 months, with constant colds and illness. Since I had to quit my job for the move, I have been staying home with my...
I agree whole-heartedly with Emily. I grew up in the house of a smoker and was always angry that I had to breath in the smoke. I am not a CFer but my child is. And still, my Mother insists on smoking. She doesn't do it in my house or around my children, but she reeks of smoke. And from what I...
Thanks Debbie. Another condition to get use to I spose. He's been on the Actigol about a week now. Haven't really noticed any changes in his stools or the bloating in his tummy. Poor guy looks so uncomfortable by the end of the day. I guess I was hoping this was a fix for that problem. At least...
WHATEVER you do, don't give up! Your daughter needs you to be her advocate. If you know something isn't right, than it isn't right. Be persistant until you find a Dr that will take your concerns serious. Whether you're in the UK or the states, one thing seems to be common and that is that...
I called the CF coordinator yesterday to try and get more information. Though she answered them readily, it still sounds vague to me. Maybe after the ultrasound we will have more specific information about his status. I would appreciate your comments after the speech. I can't seem to find out...
Thank you Sharon. I've had a couple of days to let it sink in. There's so much to learn about this disease. I thought I had brought myself up to speed on it all, but there always seems to be more.
Thank you Sharon. I've had a couple of days to let it sink in. There's so much to learn about this disease. I thought I had brought myself up to speed on it all, but there always seems to be more.
My husband and I were both active in raising money for CF years before we even knew each other. Neither of us had it or knew anyone that had it. I raised it with my cheerleading team and he did Great Strides walks way back when with friends for 'something to do'. How ironic when we found out our...
My husband and I were both active in raising money for CF years before we even knew each other. Neither of us had it or knew anyone that had it. I raised it with my cheerleading team and he did Great Strides walks way back when with friends for 'something to do'. How ironic when we found out our...
Actigol is what they prescribed. Is this not a common condition? The CF nurse sounded like this was normal for CFers, but it scares me a little. I haven't really seen anyone mention this. I seem to learn more here than I do on the spot in the clinic, so I wasn't sure how common it is. Any input...
Actigol is what they prescribed. Is this not a common condition? The CF nurse sounded like this was normal for CFers, but it scares me a little. I haven't really seen anyone mention this. I seem to learn more here than I do on the spot in the clinic, so I wasn't sure how common it is. Any input...
Good Luck Barbara. And like everyone has said, Trust your instincts! It seems like peds are too lax on this. I too 'knew' something was wrong and wasn't taken serious until my son was 12 months. The hospital we went to ruled out CF and Celiac Sprue and told me it was a phase. Even my husband was...
Good Luck Barbara. And like everyone has said, Trust your instincts! It seems like peds are too lax on this. I too 'knew' something was wrong and wasn't taken serious until my son was 12 months. The hospital we went to ruled out CF and Celiac Sprue and told me it was a phase. Even my husband was...
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