update on my son

[Ratatosk]

DS was tested as an infant and his was 32; however, another doctor had ordered bloodwork and the test came back with CF. Did they give you any indication of the number?

At a Great Strides meeting I seem to recall another parent saying that "they knew right away" their toddler had CF during the sweat test to "rule out CF" because their child's arm was covered in blue ink. I seem to recall there was some sort of blue dye or color when DS had his test. Not sure what this mom's comments meant -- if it was the tech who was administering the test or if the parents themselves were familiar enough to know that wasn't a good sign.

 

[Ratatosk]

DS was tested as an infant and his was 32; however, another doctor had ordered bloodwork and the test came back with CF. Did they give you any indication of the number?

At a Great Strides meeting I seem to recall another parent saying that "they knew right away" their toddler had CF during the sweat test to "rule out CF" because their child's arm was covered in blue ink. I seem to recall there was some sort of blue dye or color when DS had his test. Not sure what this mom's comments meant -- if it was the tech who was administering the test or if the parents themselves were familiar enough to know that wasn't a good sign.

 

[Ratatosk]

DS was tested as an infant and his was 32; however, another doctor had ordered bloodwork and the test came back with CF. Did they give you any indication of the number?

At a Great Strides meeting I seem to recall another parent saying that "they knew right away" their toddler had CF during the sweat test to "rule out CF" because their child's arm was covered in blue ink. I seem to recall there was some sort of blue dye or color when DS had his test. Not sure what this mom's comments meant -- if it was the tech who was administering the test or if the parents themselves were familiar enough to know that wasn't a good sign.

 

[Ratatosk]

DS was tested as an infant and his was 32; however, another doctor had ordered bloodwork and the test came back with CF. Did they give you any indication of the number?

At a Great Strides meeting I seem to recall another parent saying that "they knew right away" their toddler had CF during the sweat test to "rule out CF" because their child's arm was covered in blue ink. I seem to recall there was some sort of blue dye or color when DS had his test. Not sure what this mom's comments meant -- if it was the tech who was administering the test or if the parents themselves were familiar enough to know that wasn't a good sign.

 

[Ratatosk]

DS was tested as an infant and his was 32; however, another doctor had ordered bloodwork and the test came back with CF. Did they give you any indication of the number?

At a Great Strides meeting I seem to recall another parent saying that "they knew right away" their toddler had CF during the sweat test to "rule out CF" because their child's arm was covered in blue ink. I seem to recall there was some sort of blue dye or color when DS had his test. Not sure what this mom's comments meant -- if it was the tech who was administering the test or if the parents themselves were familiar enough to know that wasn't a good sign.

 

[camsmama]

hmmm. thanks for your advice. the test was at an accredited CF center (at the university hospital in MN) and the immediate sweat test was in addition to the real one. they stimulated sweat from both his arms and did the immediate one only on his leg. so it was in addition to the arm tests. i am going to call and get the numbers today. i will let you know! thanks so much for all your input. he had blood testing as well. i don't think allergy testing yet, but all the blood tests came back fine. no fecal fat tests yet either.

thanks again! IMG]i/expressions/face-icon-small-sad.gif" border="0[/IMG] i'll stay in touch!

 

[camsmama]

hmmm. thanks for your advice. the test was at an accredited CF center (at the university hospital in MN) and the immediate sweat test was in addition to the real one. they stimulated sweat from both his arms and did the immediate one only on his leg. so it was in addition to the arm tests. i am going to call and get the numbers today. i will let you know! thanks so much for all your input. he had blood testing as well. i don't think allergy testing yet, but all the blood tests came back fine. no fecal fat tests yet either.

thanks again! IMG]i/expressions/face-icon-small-sad.gif" border="0[/IMG] i'll stay in touch!

 

[camsmama]

hmmm. thanks for your advice. the test was at an accredited CF center (at the university hospital in MN) and the immediate sweat test was in addition to the real one. they stimulated sweat from both his arms and did the immediate one only on his leg. so it was in addition to the arm tests. i am going to call and get the numbers today. i will let you know! thanks so much for all your input. he had blood testing as well. i don't think allergy testing yet, but all the blood tests came back fine. no fecal fat tests yet either.

thanks again! IMG]i/expressions/face-icon-small-sad.gif" border="0[/IMG] i'll stay in touch!

 

[camsmama]

hmmm. thanks for your advice. the test was at an accredited CF center (at the university hospital in MN) and the immediate sweat test was in addition to the real one. they stimulated sweat from both his arms and did the immediate one only on his leg. so it was in addition to the arm tests. i am going to call and get the numbers today. i will let you know! thanks so much for all your input. he had blood testing as well. i don't think allergy testing yet, but all the blood tests came back fine. no fecal fat tests yet either.

thanks again! IMG]i/expressions/face-icon-small-sad.gif" border="0[/IMG] i'll stay in touch!

 

[camsmama]

hmmm. thanks for your advice. the test was at an accredited CF center (at the university hospital in MN) and the immediate sweat test was in addition to the real one. they stimulated sweat from both his arms and did the immediate one only on his leg. so it was in addition to the arm tests. i am going to call and get the numbers today. i will let you know! thanks so much for all your input. he had blood testing as well. i don't think allergy testing yet, but all the blood tests came back fine. no fecal fat tests yet either.

thanks again! IMG]i/expressions/face-icon-small-sad.gif" border="0[/IMG] i'll stay in touch!

 

[camsmama]

ok i just called the technician. she remembered my little guy cause he made her laugh!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

she said that he tested 9 on both arms, and produced 75 ml (or something like that) plently of sweat for an accurate result. (that immediate results test was done on his leg only and not considered in the official results).

what do i do now? can i consider this negative??

 

[camsmama]

ok i just called the technician. she remembered my little guy cause he made her laugh!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

she said that he tested 9 on both arms, and produced 75 ml (or something like that) plently of sweat for an accurate result. (that immediate results test was done on his leg only and not considered in the official results).

what do i do now? can i consider this negative??

 

[camsmama]

ok i just called the technician. she remembered my little guy cause he made her laugh!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

she said that he tested 9 on both arms, and produced 75 ml (or something like that) plently of sweat for an accurate result. (that immediate results test was done on his leg only and not considered in the official results).

what do i do now? can i consider this negative??

 

[camsmama]

ok i just called the technician. she remembered my little guy cause he made her laugh!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

she said that he tested 9 on both arms, and produced 75 ml (or something like that) plently of sweat for an accurate result. (that immediate results test was done on his leg only and not considered in the official results).

what do i do now? can i consider this negative??

 

[camsmama]

ok i just called the technician. she remembered my little guy cause he made her laugh!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

she said that he tested 9 on both arms, and produced 75 ml (or something like that) plently of sweat for an accurate result. (that immediate results test was done on his leg only and not considered in the official results).

what do i do now? can i consider this negative??

 

[Alyssa]

That is very good news!.... so to recap - you did get a standard sweat test at an accredited facility and you got two single digit numbers. <b>That is all very good</b>.

There is another mother on the site right now who is also looking at sweat test numbers of 7 & 8. I have copied a quote from Steve on the Ambry posts recently replying to her question -- here is what he said

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

Alexsmom,



I would say very unlikely, usually the ones where we find an atypical form of CF have sweats in the borderline or high normal range, such as over 30.



Anything is possible, but I would say if a reliable sweat test was in single digits it is very unlikely we will find anything.



Steve</end quote></div>





**********

I would still be asking about the fecal fat testing - it would be valuable to find out - if your little guy could benefit from enzymes and start putting on weight that would be wonderful.

 

[Alyssa]

That is very good news!.... so to recap - you did get a standard sweat test at an accredited facility and you got two single digit numbers. <b>That is all very good</b>.

There is another mother on the site right now who is also looking at sweat test numbers of 7 & 8. I have copied a quote from Steve on the Ambry posts recently replying to her question -- here is what he said

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

Alexsmom,



I would say very unlikely, usually the ones where we find an atypical form of CF have sweats in the borderline or high normal range, such as over 30.



Anything is possible, but I would say if a reliable sweat test was in single digits it is very unlikely we will find anything.



Steve</end quote></div>





**********

I would still be asking about the fecal fat testing - it would be valuable to find out - if your little guy could benefit from enzymes and start putting on weight that would be wonderful.

 

[Alyssa]

That is very good news!.... so to recap - you did get a standard sweat test at an accredited facility and you got two single digit numbers. <b>That is all very good</b>.

There is another mother on the site right now who is also looking at sweat test numbers of 7 & 8. I have copied a quote from Steve on the Ambry posts recently replying to her question -- here is what he said

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

Alexsmom,



I would say very unlikely, usually the ones where we find an atypical form of CF have sweats in the borderline or high normal range, such as over 30.



Anything is possible, but I would say if a reliable sweat test was in single digits it is very unlikely we will find anything.



Steve</end quote></div>





**********

I would still be asking about the fecal fat testing - it would be valuable to find out - if your little guy could benefit from enzymes and start putting on weight that would be wonderful.

 

[Alyssa]

That is very good news!.... so to recap - you did get a standard sweat test at an accredited facility and you got two single digit numbers. <b>That is all very good</b>.

There is another mother on the site right now who is also looking at sweat test numbers of 7 & 8. I have copied a quote from Steve on the Ambry posts recently replying to her question -- here is what he said

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

Alexsmom,



I would say very unlikely, usually the ones where we find an atypical form of CF have sweats in the borderline or high normal range, such as over 30.



Anything is possible, but I would say if a reliable sweat test was in single digits it is very unlikely we will find anything.



Steve</end quote>





**********

I would still be asking about the fecal fat testing - it would be valuable to find out - if your little guy could benefit from enzymes and start putting on weight that would be wonderful.

 

[Alyssa]

That is very good news!.... so to recap - you did get a standard sweat test at an accredited facility and you got two single digit numbers. <b>That is all very good</b>.

There is another mother on the site right now who is also looking at sweat test numbers of 7 & 8. I have copied a quote from Steve on the Ambry posts recently replying to her question -- here is what he said

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

Alexsmom,



I would say very unlikely, usually the ones where we find an atypical form of CF have sweats in the borderline or high normal range, such as over 30.



Anything is possible, but I would say if a reliable sweat test was in single digits it is very unlikely we will find anything.



Steve</end quote>





**********

I would still be asking about the fecal fat testing - it would be valuable to find out - if your little guy could benefit from enzymes and start putting on weight that would be wonderful.