Back from Grand Rapids and confused as ever.

holmfamily1992 · Jul 25, 2008

I think waiting waiting is the hardest part in all this BUT, we do have the fundraiser to look forward to and that will take up a lot of my time for the next month that is for sure.

It is very hard for me to understand how the doctors can rely on sweat test for a definate answer especailly knowing how much they can vary. Im also glad that they are doing full panel testing on all the kids. I can trust those results.

And to Fran, I have never heard of coca oil. I will have to see if I can get it around here. My sister also hooked me up with Rice Milk. I can actually use that for the shakes instead of whole milk.

I hope Dylan and the rest of my children grow to be big men. 2 already are thats for sure. Dylan just looks so aweful do to the non weight gain its scary.

And to Jess, I know what you mean about telling the doctors there is something wrong. My 16 year old has been suffering from a heart condition now since he was 13. It finally took his blood pressure to go over 147/115 for someone to take notice. Low and behold mom was right. They finally sent him to a cardiologist and that is where they found the problem. Now we are just working on getting his meds right so he has no side effects. Its just blood pressure medication and surgry is in the future. They want to get him through sports and high school first. Now this kid scares me. Have you heard of these kids dying on the basketball court? Yeah, that him. He just needs to listen to the warning signs. And now that he knows he can dye, he's listening.
And I will be as obnoxious as I can till I hear something!! lol

It was great to hear from you guys,
Tina

I have new photos but it isnt showing up, Im not sure whats wrong with this.

holmfamily1992 · Jul 25, 2008

I think waiting waiting is the hardest part in all this BUT, we do have the fundraiser to look forward to and that will take up a lot of my time for the next month that is for sure.

It is very hard for me to understand how the doctors can rely on sweat test for a definate answer especailly knowing how much they can vary. Im also glad that they are doing full panel testing on all the kids. I can trust those results.

And to Fran, I have never heard of coca oil. I will have to see if I can get it around here. My sister also hooked me up with Rice Milk. I can actually use that for the shakes instead of whole milk.

I hope Dylan and the rest of my children grow to be big men. 2 already are thats for sure. Dylan just looks so aweful do to the non weight gain its scary.

And to Jess, I know what you mean about telling the doctors there is something wrong. My 16 year old has been suffering from a heart condition now since he was 13. It finally took his blood pressure to go over 147/115 for someone to take notice. Low and behold mom was right. They finally sent him to a cardiologist and that is where they found the problem. Now we are just working on getting his meds right so he has no side effects. Its just blood pressure medication and surgry is in the future. They want to get him through sports and high school first. Now this kid scares me. Have you heard of these kids dying on the basketball court? Yeah, that him. He just needs to listen to the warning signs. And now that he knows he can dye, he's listening.
And I will be as obnoxious as I can till I hear something!! lol

It was great to hear from you guys,
Tina

I have new photos but it isnt showing up, Im not sure whats wrong with this.

holmfamily1992 · Jul 25, 2008

I think waiting waiting is the hardest part in all this BUT, we do have the fundraiser to look forward to and that will take up a lot of my time for the next month that is for sure.

It is very hard for me to understand how the doctors can rely on sweat test for a definate answer especailly knowing how much they can vary. Im also glad that they are doing full panel testing on all the kids. I can trust those results.

And to Fran, I have never heard of coca oil. I will have to see if I can get it around here. My sister also hooked me up with Rice Milk. I can actually use that for the shakes instead of whole milk.

I hope Dylan and the rest of my children grow to be big men. 2 already are thats for sure. Dylan just looks so aweful do to the non weight gain its scary.

And to Jess, I know what you mean about telling the doctors there is something wrong. My 16 year old has been suffering from a heart condition now since he was 13. It finally took his blood pressure to go over 147/115 for someone to take notice. Low and behold mom was right. They finally sent him to a cardiologist and that is where they found the problem. Now we are just working on getting his meds right so he has no side effects. Its just blood pressure medication and surgry is in the future. They want to get him through sports and high school first. Now this kid scares me. Have you heard of these kids dying on the basketball court? Yeah, that him. He just needs to listen to the warning signs. And now that he knows he can dye, he's listening.
And I will be as obnoxious as I can till I hear something!! lol

It was great to hear from you guys,
Tina

I have new photos but it isnt showing up, Im not sure whats wrong with this.

holmfamily1992 · Jul 25, 2008

I think waiting waiting is the hardest part in all this BUT, we do have the fundraiser to look forward to and that will take up a lot of my time for the next month that is for sure.

It is very hard for me to understand how the doctors can rely on sweat test for a definate answer especailly knowing how much they can vary. Im also glad that they are doing full panel testing on all the kids. I can trust those results.

And to Fran, I have never heard of coca oil. I will have to see if I can get it around here. My sister also hooked me up with Rice Milk. I can actually use that for the shakes instead of whole milk.

I hope Dylan and the rest of my children grow to be big men. 2 already are thats for sure. Dylan just looks so aweful do to the non weight gain its scary.

And to Jess, I know what you mean about telling the doctors there is something wrong. My 16 year old has been suffering from a heart condition now since he was 13. It finally took his blood pressure to go over 147/115 for someone to take notice. Low and behold mom was right. They finally sent him to a cardiologist and that is where they found the problem. Now we are just working on getting his meds right so he has no side effects. Its just blood pressure medication and surgry is in the future. They want to get him through sports and high school first. Now this kid scares me. Have you heard of these kids dying on the basketball court? Yeah, that him. He just needs to listen to the warning signs. And now that he knows he can dye, he's listening.
And I will be as obnoxious as I can till I hear something!! lol

It was great to hear from you guys,
Tina

I have new photos but it isnt showing up, Im not sure whats wrong with this.

holmfamily1992 · Jul 25, 2008

I think waiting waiting is the hardest part in all this BUT, we do have the fundraiser to look forward to and that will take up a lot of my time for the next month that is for sure.
 
 It is very hard for me to understand how the doctors can rely on sweat test for a definate answer especailly knowing how much they can vary. Im also glad that they are doing full panel testing on all the kids. I can trust those results.
 
 And to Fran, I have never heard of coca oil. I will have to see if I can get it around here. My sister also hooked me up with Rice Milk. I can actually use that for the shakes instead of whole milk.
 
 I hope Dylan and the rest of my children grow to be big men. 2 already are thats for sure. Dylan just looks so aweful do to the non weight gain its scary.
 
 And to Jess, I know what you mean about telling the doctors there is something wrong. My 16 year old has been suffering from a heart condition now since he was 13. It finally took his blood pressure to go over 147/115 for someone to take notice. Low and behold mom was right. They finally sent him to a cardiologist and that is where they found the problem. Now we are just working on getting his meds right so he has no side effects. Its just blood pressure medication and surgry is in the future. They want to get him through sports and high school first. Now this kid scares me. Have you heard of these kids dying on the basketball court? Yeah, that him. He just needs to listen to the warning signs. And now that he knows he can dye, he's listening.
 And I will be as obnoxious as I can till I hear something!! lol
 
 It was great to hear from you guys,
 Tina
 
 I have new photos but it isnt showing up, Im not sure whats wrong with this.

jennc0315 · Jul 25, 2008

Wow, that is confusing! I thought that a positive was always positive and negative was always negative too. When Logan was diagnosed they said that if his mutations didnt show up on the panel Spectrum tested for they would send it to Mayo. Are they sending Dylan's blood there for genetic testing too?

Where did you all sleep? Did you see JoyLyn the next day? Oh gosh I would of been furious about that.

Take care!!! Keep us posted!

Jenn

jennc0315 · Jul 25, 2008

Wow, that is confusing! I thought that a positive was always positive and negative was always negative too. When Logan was diagnosed they said that if his mutations didnt show up on the panel Spectrum tested for they would send it to Mayo. Are they sending Dylan's blood there for genetic testing too?

Where did you all sleep? Did you see JoyLyn the next day? Oh gosh I would of been furious about that.

Take care!!! Keep us posted!

Jenn

jennc0315 · Jul 25, 2008

Wow, that is confusing! I thought that a positive was always positive and negative was always negative too. When Logan was diagnosed they said that if his mutations didnt show up on the panel Spectrum tested for they would send it to Mayo. Are they sending Dylan's blood there for genetic testing too?

Where did you all sleep? Did you see JoyLyn the next day? Oh gosh I would of been furious about that.

Take care!!! Keep us posted!

Jenn

jennc0315 · Jul 25, 2008

Wow, that is confusing! I thought that a positive was always positive and negative was always negative too. When Logan was diagnosed they said that if his mutations didnt show up on the panel Spectrum tested for they would send it to Mayo. Are they sending Dylan's blood there for genetic testing too?

Where did you all sleep? Did you see JoyLyn the next day? Oh gosh I would of been furious about that.

Take care!!! Keep us posted!

Jenn

jennc0315 · Jul 25, 2008

Wow, that is confusing! I thought that a positive was always positive and negative was always negative too. When Logan was diagnosed they said that if his mutations didnt show up on the panel Spectrum tested for they would send it to Mayo. Are they sending Dylan's blood there for genetic testing too?
 
 Where did you all sleep? Did you see JoyLyn the next day? Oh gosh I would of been furious about that.
 
 
 Take care!!! Keep us posted!
 
 Jenn

letefk · Jul 25, 2008

Tina,

My youngest had a negative sweat test, but her sister's was borderline. Since both had some symptoms, the clinic ordered genetic tests on both. The genetics came back the same for both, and in both cases, there was ambiguity about what it meant, since they where heterozygous for Delta 508, but with a combination of 5T/9T and another polymorphism that, in combination, has been known to cause atypical forms of CF. Even then, different doctors interpreted the tests different ways, and the insurance company would not pay for Pulmozyme or a Vest. It took culturing psuedomonas and a case of pneumonia that landed my oldest in the hospital (and a letter writing campaign from our doctors) to get them approved. From what we have heard, it is not that unusual for atypical expressions to get false positives on the sweat test. If you look at the literature from the decades before the genetic test, there was always a small class of people that seemed to have CF symptoms, but were not diagnosed as CF because they passed sweat tests. They continued to have symptoms, but could not get treated. I can't say if this is what you are dealing with, but because of the genetics in our girls, it took not only a genetic test, but about a year of the clinic watching their symptoms to get a definitive diagnosis.

letefk · Jul 25, 2008

Tina,

My youngest had a negative sweat test, but her sister's was borderline. Since both had some symptoms, the clinic ordered genetic tests on both. The genetics came back the same for both, and in both cases, there was ambiguity about what it meant, since they where heterozygous for Delta 508, but with a combination of 5T/9T and another polymorphism that, in combination, has been known to cause atypical forms of CF. Even then, different doctors interpreted the tests different ways, and the insurance company would not pay for Pulmozyme or a Vest. It took culturing psuedomonas and a case of pneumonia that landed my oldest in the hospital (and a letter writing campaign from our doctors) to get them approved. From what we have heard, it is not that unusual for atypical expressions to get false positives on the sweat test. If you look at the literature from the decades before the genetic test, there was always a small class of people that seemed to have CF symptoms, but were not diagnosed as CF because they passed sweat tests. They continued to have symptoms, but could not get treated. I can't say if this is what you are dealing with, but because of the genetics in our girls, it took not only a genetic test, but about a year of the clinic watching their symptoms to get a definitive diagnosis.

letefk · Jul 25, 2008

Tina,

My youngest had a negative sweat test, but her sister's was borderline. Since both had some symptoms, the clinic ordered genetic tests on both. The genetics came back the same for both, and in both cases, there was ambiguity about what it meant, since they where heterozygous for Delta 508, but with a combination of 5T/9T and another polymorphism that, in combination, has been known to cause atypical forms of CF. Even then, different doctors interpreted the tests different ways, and the insurance company would not pay for Pulmozyme or a Vest. It took culturing psuedomonas and a case of pneumonia that landed my oldest in the hospital (and a letter writing campaign from our doctors) to get them approved. From what we have heard, it is not that unusual for atypical expressions to get false positives on the sweat test. If you look at the literature from the decades before the genetic test, there was always a small class of people that seemed to have CF symptoms, but were not diagnosed as CF because they passed sweat tests. They continued to have symptoms, but could not get treated. I can't say if this is what you are dealing with, but because of the genetics in our girls, it took not only a genetic test, but about a year of the clinic watching their symptoms to get a definitive diagnosis.

letefk · Jul 25, 2008

Tina,

My youngest had a negative sweat test, but her sister's was borderline. Since both had some symptoms, the clinic ordered genetic tests on both. The genetics came back the same for both, and in both cases, there was ambiguity about what it meant, since they where heterozygous for Delta 508, but with a combination of 5T/9T and another polymorphism that, in combination, has been known to cause atypical forms of CF. Even then, different doctors interpreted the tests different ways, and the insurance company would not pay for Pulmozyme or a Vest. It took culturing psuedomonas and a case of pneumonia that landed my oldest in the hospital (and a letter writing campaign from our doctors) to get them approved. From what we have heard, it is not that unusual for atypical expressions to get false positives on the sweat test. If you look at the literature from the decades before the genetic test, there was always a small class of people that seemed to have CF symptoms, but were not diagnosed as CF because they passed sweat tests. They continued to have symptoms, but could not get treated. I can't say if this is what you are dealing with, but because of the genetics in our girls, it took not only a genetic test, but about a year of the clinic watching their symptoms to get a definitive diagnosis.

letefk · Jul 25, 2008

Tina,
 
 My youngest had a negative sweat test, but her sister's was borderline. Since both had some symptoms, the clinic ordered genetic tests on both. The genetics came back the same for both, and in both cases, there was ambiguity about what it meant, since they where heterozygous for Delta 508, but with a combination of 5T/9T and another polymorphism that, in combination, has been known to cause atypical forms of CF. Even then, different doctors interpreted the tests different ways, and the insurance company would not pay for Pulmozyme or a Vest. It took culturing psuedomonas and a case of pneumonia that landed my oldest in the hospital (and a letter writing campaign from our doctors) to get them approved. From what we have heard, it is not that unusual for atypical expressions to get false positives on the sweat test. If you look at the literature from the decades before the genetic test, there was always a small class of people that seemed to have CF symptoms, but were not diagnosed as CF because they passed sweat tests. They continued to have symptoms, but could not get treated. I can't say if this is what you are dealing with, but because of the genetics in our girls, it took not only a genetic test, but about a year of the clinic watching their symptoms to get a definitive diagnosis.

CFHockeyMom · Jul 25, 2008

Sweat tests are not that accurate and that is why genetic testing is really the only way to get a definitive answer.. False negatives are fairly common with the sweat test however false positives are not.

I know there was a post on here some time ago about sweat test accuracy and the rate of false positives was close to zero. I'll see if I can dig it up.

CFHockeyMom · Jul 25, 2008

Sweat tests are not that accurate and that is why genetic testing is really the only way to get a definitive answer.. False negatives are fairly common with the sweat test however false positives are not.

I know there was a post on here some time ago about sweat test accuracy and the rate of false positives was close to zero. I'll see if I can dig it up.

CFHockeyMom · Jul 25, 2008

Sweat tests are not that accurate and that is why genetic testing is really the only way to get a definitive answer.. False negatives are fairly common with the sweat test however false positives are not.

I know there was a post on here some time ago about sweat test accuracy and the rate of false positives was close to zero. I'll see if I can dig it up.

CFHockeyMom · Jul 25, 2008

Sweat tests are not that accurate and that is why genetic testing is really the only way to get a definitive answer.. False negatives are fairly common with the sweat test however false positives are not.

I know there was a post on here some time ago about sweat test accuracy and the rate of false positives was close to zero. I'll see if I can dig it up.

CFHockeyMom · Jul 25, 2008

Sweat tests are not that accurate and that is why genetic testing is really the only way to get a definitive answer.. False negatives are fairly common with the sweat test however false positives are not.
 
 I know there was a post on here some time ago about sweat test accuracy and the rate of false positives was close to zero. I'll see if I can dig it up.

Back from Grand Rapids and confused as ever.

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