chickening out!

M

mom2owen

New member
We have our appointment at the CF clinic on Monday. I am starting to play tricks with my own mind and am so tempted not to go at all! We have been through years of searching for Owen's diagnosis and we have been failed so many times, I am pretty much counting on it happening again Monday. I dread going to another new doctor and having them say what it's NOT and not telling us how to help Owen.
Plus, besides a tube stoma infection, he has been doing really well for a couple of weeks. No bloody noses, minimal cough. His blood sugars have been high again and he sweats tons but otherwise he has been doing really well so I keep telling myself we are making too big a deal of it all and we should just stay home.
I guess I need some encouragement and a reminder that failure to thrive without Creon and a g-tube are not normal, even if it is to us. And that his sinus infections and nose bleeds as well as "asthma" and pneumonia are not normal. Even typing it helps but I still just know those things as normal for us. I have lost all my perspective.
Are we doing the right thing by going to the CF clinic? What will I do if they send us away because of his sweat chlorides only being in the 30's and no known mutations on the panel Mayo did? I feel like a crazy woman wanting her kid to be sick, which is sooooo far from the truth. I just want to be able to call it something and most importantly to treat it! But I have lost faith in the system and am not even close to being convinced that we will get help.
Thanks. I am glad to just get it out of my head and will just keep taking each step as it comes.
 
M

mom2owen

New member
We have our appointment at the CF clinic on Monday. I am starting to play tricks with my own mind and am so tempted not to go at all! We have been through years of searching for Owen's diagnosis and we have been failed so many times, I am pretty much counting on it happening again Monday. I dread going to another new doctor and having them say what it's NOT and not telling us how to help Owen.
Plus, besides a tube stoma infection, he has been doing really well for a couple of weeks. No bloody noses, minimal cough. His blood sugars have been high again and he sweats tons but otherwise he has been doing really well so I keep telling myself we are making too big a deal of it all and we should just stay home.
I guess I need some encouragement and a reminder that failure to thrive without Creon and a g-tube are not normal, even if it is to us. And that his sinus infections and nose bleeds as well as "asthma" and pneumonia are not normal. Even typing it helps but I still just know those things as normal for us. I have lost all my perspective.
Are we doing the right thing by going to the CF clinic? What will I do if they send us away because of his sweat chlorides only being in the 30's and no known mutations on the panel Mayo did? I feel like a crazy woman wanting her kid to be sick, which is sooooo far from the truth. I just want to be able to call it something and most importantly to treat it! But I have lost faith in the system and am not even close to being convinced that we will get help.
Thanks. I am glad to just get it out of my head and will just keep taking each step as it comes.
 
M

mom2owen

New member
We have our appointment at the CF clinic on Monday. I am starting to play tricks with my own mind and am so tempted not to go at all! We have been through years of searching for Owen's diagnosis and we have been failed so many times, I am pretty much counting on it happening again Monday. I dread going to another new doctor and having them say what it's NOT and not telling us how to help Owen.
<br />Plus, besides a tube stoma infection, he has been doing really well for a couple of weeks. No bloody noses, minimal cough. His blood sugars have been high again and he sweats tons but otherwise he has been doing really well so I keep telling myself we are making too big a deal of it all and we should just stay home.
<br />I guess I need some encouragement and a reminder that failure to thrive without Creon and a g-tube are not normal, even if it is to us. And that his sinus infections and nose bleeds as well as "asthma" and pneumonia are not normal. Even typing it helps but I still just know those things as normal for us. I have lost all my perspective.
<br />Are we doing the right thing by going to the CF clinic? What will I do if they send us away because of his sweat chlorides only being in the 30's and no known mutations on the panel Mayo did? I feel like a crazy woman wanting her kid to be sick, which is sooooo far from the truth. I just want to be able to call it something and most importantly to treat it! But I have lost faith in the system and am not even close to being convinced that we will get help.
<br />Thanks. I am glad to just get it out of my head and will just keep taking each step as it comes.
 
M

Mommafirst

Guest
You deserve and answer and so does your son. Healthy kids don't need feeding tubes and pancreatic enzymes. Healthy kids don't get repeated pneumonia. You are DEFINITELY doing the right thing...I just hope you have a doctor who will LISTEN and help you figure this thing out.
 
M

Mommafirst

Guest
You deserve and answer and so does your son. Healthy kids don't need feeding tubes and pancreatic enzymes. Healthy kids don't get repeated pneumonia. You are DEFINITELY doing the right thing...I just hope you have a doctor who will LISTEN and help you figure this thing out.
 
M

Mommafirst

Guest
You deserve and answer and so does your son. Healthy kids don't need feeding tubes and pancreatic enzymes. Healthy kids don't get repeated pneumonia. You are DEFINITELY doing the right thing...I just hope you have a doctor who will LISTEN and help you figure this thing out.
 
Y

ymikhale

New member
definitely don't give up. All those symptoms do sound like CF and many patients have very low sweat test numbers and still have CF. Did they just run a panel as a genetic test? If so, you should ask for the complete test which covers all know mutations. Good luck and keep us posted
 
Y

ymikhale

New member
definitely don't give up. All those symptoms do sound like CF and many patients have very low sweat test numbers and still have CF. Did they just run a panel as a genetic test? If so, you should ask for the complete test which covers all know mutations. Good luck and keep us posted
 
Y

ymikhale

New member
definitely don't give up. All those symptoms do sound like CF and many patients have very low sweat test numbers and still have CF. Did they just run a panel as a genetic test? If so, you should ask for the complete test which covers all know mutations. Good luck and keep us posted
 
L

logansmom09

New member
Moms know their kids better than anyone else. Keep after it until you get the right answer. I waited 12 years. Go with your gut. I know you get tired, frustrated, sad, disappointed. Rest, then go for another round. You'll get the answer eventually.
 
L

logansmom09

New member
Moms know their kids better than anyone else. Keep after it until you get the right answer. I waited 12 years. Go with your gut. I know you get tired, frustrated, sad, disappointed. Rest, then go for another round. You'll get the answer eventually.
 
L

logansmom09

New member
Moms know their kids better than anyone else. Keep after it until you get the right answer. I waited 12 years. Go with your gut. I know you get tired, frustrated, sad, disappointed. Rest, then go for another round. You'll get the answer eventually.
 
C

Cherylwithone

Guest
I was wondering how it went on Monday. I hope you got the answers you were looking for. I would say Owen does have CF by all the symptons he has. Everything he is going through is not normal for normal kids but, normal for people with CF. That is their normal.

Please just hang in there and listen to your mommy voice.
 
C

Cherylwithone

Guest
I was wondering how it went on Monday. I hope you got the answers you were looking for. I would say Owen does have CF by all the symptons he has. Everything he is going through is not normal for normal kids but, normal for people with CF. That is their normal.

Please just hang in there and listen to your mommy voice.
 
C

Cherylwithone

Guest
I was wondering how it went on Monday. I hope you got the answers you were looking for. I would say Owen does have CF by all the symptons he has. Everything he is going through is not normal for normal kids but, normal for people with CF. That is their normal.
<br />
<br />Please just hang in there and listen to your mommy voice.
 
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