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[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>DonnaB</b></i>
How can one arm be different from another, his other arm was 36.
</end quote></div>

Because it's an inexact science. And a very old-school test.

<div class="FTQUOTE"><begin quote>
What if the new test comes back below 40 - should I still pursue this or not?
</end quote></div>

There are plenty of CFers with a 40 or below. That's why it's such a horrible best.

Get a genetic test as suggested above.

<div class="FTQUOTE"><begin quote>How do you know if theyare pancreatic insufficient? </end quote></div>

They take a stool sample and test it.

 

[DonnaB]

I guess I feel like I am in some sort of denyal. My son does not seem as bad a some of the stories I have read about. How do I handle all of this? I just watched the video of danny under the family group and cried. Are there different forms/varriations of CF mild,severe..... My son is only 32 lbs. he is in the 22% for weight. He has not gained any weight this winter so that is why I started down the CF route. I TRULY appreciate all of your comments.

 

[DonnaB]

I guess I feel like I am in some sort of denyal. My son does not seem as bad a some of the stories I have read about. How do I handle all of this? I just watched the video of danny under the family group and cried. Are there different forms/varriations of CF mild,severe..... My son is only 32 lbs. he is in the 22% for weight. He has not gained any weight this winter so that is why I started down the CF route. I TRULY appreciate all of your comments.

 

[DonnaB]

I guess I feel like I am in some sort of denyal. My son does not seem as bad a some of the stories I have read about. How do I handle all of this? I just watched the video of danny under the family group and cried. Are there different forms/varriations of CF mild,severe..... My son is only 32 lbs. he is in the 22% for weight. He has not gained any weight this winter so that is why I started down the CF route. I TRULY appreciate all of your comments.

 

[Alyssa]

Please read the first entry on my blog page (link in my signature line)

It addresses sweat test numbers & mild variant (A-typical) CF.

Feel free to ask me anything

Oh, and YES YES YES, pursue genetic testing

 

[Alyssa]

Please read the first entry on my blog page (link in my signature line)

It addresses sweat test numbers & mild variant (A-typical) CF.

Feel free to ask me anything

Oh, and YES YES YES, pursue genetic testing

 

[Alyssa]

Please read the first entry on my blog page (link in my signature line)

It addresses sweat test numbers & mild variant (A-typical) CF.

Feel free to ask me anything

Oh, and YES YES YES, pursue genetic testing

 

[Childressj]

WOW.
Ok Donna I have a 3 1/2 yr. old with severe Asthma and he does not have CF (or so they tell me) He had tubes at 9months old and pnemonia the whole nine yards (as they say) He weights 34 lbs (50%) as of yesterday at the doctors office and he is doing great. When the weather gets crazy or pollen count high or a cold he gets worse and he has many preventative measures...I do know that we switched from pulmocort and Floridel to Flovent with the areochamber for his preventative and he resisited that at first but he has done great with that. We still use the neb for rescue though.....Make sure that you have a good pulmonologist either way if he has Asthma or CF. They will help you with all these concerns.

 

[Childressj]

WOW.
Ok Donna I have a 3 1/2 yr. old with severe Asthma and he does not have CF (or so they tell me) He had tubes at 9months old and pnemonia the whole nine yards (as they say) He weights 34 lbs (50%) as of yesterday at the doctors office and he is doing great. When the weather gets crazy or pollen count high or a cold he gets worse and he has many preventative measures...I do know that we switched from pulmocort and Floridel to Flovent with the areochamber for his preventative and he resisited that at first but he has done great with that. We still use the neb for rescue though.....Make sure that you have a good pulmonologist either way if he has Asthma or CF. They will help you with all these concerns.

 

[Childressj]

WOW.
Ok Donna I have a 3 1/2 yr. old with severe Asthma and he does not have CF (or so they tell me) He had tubes at 9months old and pnemonia the whole nine yards (as they say) He weights 34 lbs (50%) as of yesterday at the doctors office and he is doing great. When the weather gets crazy or pollen count high or a cold he gets worse and he has many preventative measures...I do know that we switched from pulmocort and Floridel to Flovent with the areochamber for his preventative and he resisited that at first but he has done great with that. We still use the neb for rescue though.....Make sure that you have a good pulmonologist either way if he has Asthma or CF. They will help you with all these concerns.

 

[okok]

So Childressj,

Does that your son's genetic testing came back negative for CF? Was it preformed by ambry? If so, that is great to hear!! You must be relieved to know it is asthma as opposed to CF.

 

[okok]

So Childressj,

Does that your son's genetic testing came back negative for CF? Was it preformed by ambry? If so, that is great to hear!! You must be relieved to know it is asthma as opposed to CF.

 

[okok]

So Childressj,

Does that your son's genetic testing came back negative for CF? Was it preformed by ambry? If so, that is great to hear!! You must be relieved to know it is asthma as opposed to CF.

 

[scarbrough]

It is very important to stick with this until you are comfortable with your diagnosis..well, you'll never be comfortable with anyone telling you your child is "sick", but if you feel your being shrugged..go somewhere else....many cfers will tell you they had a low sweat test too...Hannah was very high but was originally tested for cf to rule it out because they didnt think she had it.....she had some weight issues but our biggest clue was an episode of rectal prolapse...she also had pyloric stenosis(nothing to do w/cf) so that masked the weight issue...she is so far a mild cf patient...anyway, go to a larger city....not sure where you live..check accredited hospitals..Vanderbilt in Nashville is where we go ..they are awesome!! Good luck and we'll keep you in our prayers!

 

[scarbrough]

It is very important to stick with this until you are comfortable with your diagnosis..well, you'll never be comfortable with anyone telling you your child is "sick", but if you feel your being shrugged..go somewhere else....many cfers will tell you they had a low sweat test too...Hannah was very high but was originally tested for cf to rule it out because they didnt think she had it.....she had some weight issues but our biggest clue was an episode of rectal prolapse...she also had pyloric stenosis(nothing to do w/cf) so that masked the weight issue...she is so far a mild cf patient...anyway, go to a larger city....not sure where you live..check accredited hospitals..Vanderbilt in Nashville is where we go ..they are awesome!! Good luck and we'll keep you in our prayers!

 

[scarbrough]

It is very important to stick with this until you are comfortable with your diagnosis..well, you'll never be comfortable with anyone telling you your child is "sick", but if you feel your being shrugged..go somewhere else....many cfers will tell you they had a low sweat test too...Hannah was very high but was originally tested for cf to rule it out because they didnt think she had it.....she had some weight issues but our biggest clue was an episode of rectal prolapse...she also had pyloric stenosis(nothing to do w/cf) so that masked the weight issue...she is so far a mild cf patient...anyway, go to a larger city....not sure where you live..check accredited hospitals..Vanderbilt in Nashville is where we go ..they are awesome!! Good luck and we'll keep you in our prayers!

 

[Childressj]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>okok</b></i>

So Childressj,



Does that your son's genetic testing came back negative for CF? Was it preformed by ambry? If so, that is great to hear!! You must be relieved to know it is asthma as opposed to CF.</end quote></div>

No, I was telling her about my 3 1/2 yr. old (braxton)that has Severe Asthma my 13 yr. (Trevor) is one that is still being tested and I am still waiting................the first test came back with only F508 so we are waiting for the deletion/detection(?) test...I will post it when I know.....................

 

[Childressj]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>okok</b></i>

So Childressj,



Does that your son's genetic testing came back negative for CF? Was it preformed by ambry? If so, that is great to hear!! You must be relieved to know it is asthma as opposed to CF.</end quote></div>

No, I was telling her about my 3 1/2 yr. old (braxton)that has Severe Asthma my 13 yr. (Trevor) is one that is still being tested and I am still waiting................the first test came back with only F508 so we are waiting for the deletion/detection(?) test...I will post it when I know.....................

 

[Childressj]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>okok</b></i>

So Childressj,



Does that your son's genetic testing came back negative for CF? Was it preformed by ambry? If so, that is great to hear!! You must be relieved to know it is asthma as opposed to CF.</end quote></div>

No, I was telling her about my 3 1/2 yr. old (braxton)that has Severe Asthma my 13 yr. (Trevor) is one that is still being tested and I am still waiting................the first test came back with only F508 so we are waiting for the deletion/detection(?) test...I will post it when I know.....................

 

[DonnaB]

Hi - I got my second sweat test results which were 23 and 26. So the first time was 40/36 and now a low one. I am not sure what to do! The genetic test you all talk about - is it just drawing blood? I may consider it if it not to invasive. I am still waiting for allergy testing at the end of this month. My son only seems to be sick from Sept. to March and than is fine, was able to get him off his flovent over last summer. Not sure how to pursue. You all have great ideas and encouragement and am glad I joined this group.