I am in the UK the doctor is a CF doctor but the hospital is a childrens hospital for everything, they are planning on doing tests still and nebs and physio which I found out today I have to keep asking as no one seems to explain to me I will see doctor on thursday after bronc tests and see if he is diagnosing him properly instead of saying he wants to avoid it because to me he has it and to the doctor but because hes not typical he wants to wait which I don't see why.
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please Advise asap
- Thread starter katie4byz
- Start date
I am in the UK the doctor is a CF doctor but the hospital is a childrens hospital for everything, they are planning on doing tests still and nebs and physio which I found out today I have to keep asking as no one seems to explain to me I will see doctor on thursday after bronc tests and see if he is diagnosing him properly instead of saying he wants to avoid it because to me he has it and to the doctor but because hes not typical he wants to wait which I don't see why.
Gentrygirl
New member
It seems odd to me (but everyone has a different situation) that he doesn't want to give an official Dx but admitted him to the hospital for IV treatment. My son was similar to yours- "Asthma" was bad until he was 12 and diagnosed. I knew it had to be something different, kept taking him in, and he kept getting the same answer. I could have kicked myself for not deciding to be the loud, mouthy mom that insists on more attention. I think if I had listened to my own doubts, we could have had an earlier Dx. Follow DrRoe's advice- you know your son best- there are never "too many" questions. My son has yet to be admitted for 2 week IV's (knock wood, count blessings, etc.), and his PFT's are good, still hanging over 100 but sneakily declining a bit at a time. Your CF doctor might suspect something odd about his current condition, and doesn't want to worry you until he knows. NOT that you should worry. Trust he is getting good care, but ask lots of questions. Stay on these forums- we'll help you with what we know. The information you will get is a LOT to digest. I remember them telling me things towards the beginning that I didn't hang on to, then when told again a few months down the road, they clicked and made sense. You'll get it. Don't worry; it'll all be okay. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Gentrygirl
New member
It seems odd to me (but everyone has a different situation) that he doesn't want to give an official Dx but admitted him to the hospital for IV treatment. My son was similar to yours- "Asthma" was bad until he was 12 and diagnosed. I knew it had to be something different, kept taking him in, and he kept getting the same answer. I could have kicked myself for not deciding to be the loud, mouthy mom that insists on more attention. I think if I had listened to my own doubts, we could have had an earlier Dx. Follow DrRoe's advice- you know your son best- there are never "too many" questions. My son has yet to be admitted for 2 week IV's (knock wood, count blessings, etc.), and his PFT's are good, still hanging over 100 but sneakily declining a bit at a time. Your CF doctor might suspect something odd about his current condition, and doesn't want to worry you until he knows. NOT that you should worry. Trust he is getting good care, but ask lots of questions. Stay on these forums- we'll help you with what we know. The information you will get is a LOT to digest. I remember them telling me things towards the beginning that I didn't hang on to, then when told again a few months down the road, they clicked and made sense. You'll get it. Don't worry; it'll all be okay. <img src="i/expressions/face-icon-small-smile.gif" border="0">
D
DrRoe
Guest
katie4byz, Here's the link to the online UK CF site http://www.cftrust.org.uk/aboutcf/whatiscf/
D
DrRoe
Guest
katie4byz, Here's the link to the online UK CF site http://www.cftrust.org.uk/aboutcf/whatiscf/