Sweat Test result :(

[Kyrasdaddy]

<SPAN class=postbody>Hi there, My daughter (23 months) was sent for a blood test a few weeks ago as she had lost weight in the last 6 months rather than put any on, bare in mind though that a week before the test she had a really high fever and ate literally nothing! The doctor sent us to hospital for tests and the Dr there said she would also run a sweat test just as a precaution although she said she highly doubted it would be CF. Any way, we got a phone call this week to say her test came back abnormal and she would need to go to a dedicated Childrens hospital for it to be ran again as the level was 74, which has now left me in bits over the thought she may have CF. Unfortunately, it wasn't me who spoke to the doctor so my wife didn't ask many questions, she was just in shock but she did call her back to discuss her worries and was told it was nothing to be overly concerened about and that 74 was not that high?! My issue is that all over the net, if it's above 59 then people are saying, "definately CF". I mean has any one had an experience like this? My daugter is generally healthy, apart from about 3 or 4 colds/fevers since she was born and a bit of constipation, she was born she's been fine.</SPAN>

 

[Kyrasdaddy]

<SPAN class=postbody>Hi there, My daughter (23 months) was sent for a blood test a few weeks ago as she had lost weight in the last 6 months rather than put any on, bare in mind though that a week before the test she had a really high fever and ate literally nothing! The doctor sent us to hospital for tests and the Dr there said she would also run a sweat test just as a precaution although she said she highly doubted it would be CF. Any way, we got a phone call this week to say her test came back abnormal and she would need to go to a dedicated Childrens hospital for it to be ran again as the level was 74, which has now left me in bits over the thought she may have CF. Unfortunately, it wasn't me who spoke to the doctor so my wife didn't ask many questions, she was just in shock but she did call her back to discuss her worries and was told it was nothing to be overly concerened about and that 74 was not that high?! My issue is that all over the net, if it's above 59 then people are saying, "definately CF". I mean has any one had an experience like this? My daugter is generally healthy, apart from about 3 or 4 colds/fevers since she was born and a bit of constipation, she was born she's been fine.</SPAN>

 

[Ratatosk]

So sorry about the test results. You'll have the opportunity at the Children's Hospital to ask questions and have more tests done. Understand the shock and not being able to discuss issues. We found out about DS' when the surgeon in the NICU said "99.9% of these cases are due to CF" and walked out the door. Fortunately, the neonatologist, called a CF specialist, who came and spoke with us, answered questions.

There's still the disbelief, being overwhelmed by the possible CF diagnosis. Just take it one step at a time. Write down some questions you want addressed at your appointment.

DS' issues were mainly digestive. Had a couple ear and sinus infections as a baby.

 

[Ratatosk]

So sorry about the test results. You'll have the opportunity at the Children's Hospital to ask questions and have more tests done. Understand the shock and not being able to discuss issues. We found out about DS' when the surgeon in the NICU said "99.9% of these cases are due to CF" and walked out the door. Fortunately, the neonatologist, called a CF specialist, who came and spoke with us, answered questions.

There's still the disbelief, being overwhelmed by the possible CF diagnosis. Just take it one step at a time. Write down some questions you want addressed at your appointment.

DS' issues were mainly digestive. Had a couple ear and sinus infections as a baby.

 

[JENNYC]

My daughter was diagnosed at age 2 as well. She had a lot of symptoms however. She ate literally 3 times as much as I did, she had 4 to 5 bowel movements a day, and not regular ones(they would smell horrible and be very non-formed, and the color of clay) Her poor little stomach would be so distended that I thought she was going to pop. She too was not putting on weight like she should(especially after eating and drinking so much). And the poor baby constantly was congested, I think in her 2 years she had only went 2 weeks without being ill. I was just thinking I would want to know what some other symptoms might be if I were stuck in limbo not knowing. I pray that she does not have it, but if she does you all will adjust and things will be okay. Better to find out now if she does have CF so you can start treatments to keep her healthy. I hope they get you in soon so that you won't be in limbo longer than necessary. Good luck and keep your chin up, no matter what God has given you this beautiful little ray of sunshine and that will never change no matter what the dr's come back with. Most people do not even know my 6 year old has it. She is just a normal kid that has to manage a couple of extra treatments to stay healthy, she doesn't even realize she is different. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JENNYC]

My daughter was diagnosed at age 2 as well. She had a lot of symptoms however. She ate literally 3 times as much as I did, she had 4 to 5 bowel movements a day, and not regular ones(they would smell horrible and be very non-formed, and the color of clay) Her poor little stomach would be so distended that I thought she was going to pop. She too was not putting on weight like she should(especially after eating and drinking so much). And the poor baby constantly was congested, I think in her 2 years she had only went 2 weeks without being ill. I was just thinking I would want to know what some other symptoms might be if I were stuck in limbo not knowing. I pray that she does not have it, but if she does you all will adjust and things will be okay. Better to find out now if she does have CF so you can start treatments to keep her healthy. I hope they get you in soon so that you won't be in limbo longer than necessary. Good luck and keep your chin up, no matter what God has given you this beautiful little ray of sunshine and that will never change no matter what the dr's come back with. Most people do not even know my 6 year old has it. She is just a normal kid that has to manage a couple of extra treatments to stay healthy, she doesn't even realize she is different. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[BLKC032209]

<P>We felt the same helplessness after we were told our daughter (age 9days) had failed the so called "sweat" test. It seemed to me like a very silly test to find such a serious major illness? But the results were correct and be thankful you will be able to learn and manage this disease from an very early age. She is now 2 years, 8 months and has her ups and</P>
<P>downs (30 nights logged in hospitals thus far,) but your CF facility should know their stuff and guide you through. I remember my wife crying for three straight days after the diagnosis, but it is mostly that initial shock. Good Luck.</P>

 

[BLKC032209]

<P>We felt the same helplessness after we were told our daughter (age 9days) had failed the so called "sweat" test. It seemed to me like a very silly test to find such a serious major illness? But the results were correct and be thankful you will be able to learn and manage this disease from an very early age. She is now 2 years, 8 months and has her ups and</P>
<P>downs (30 nights logged in hospitals thus far,) but your CF facility should know their stuff and guide you through. I remember my wife crying for three straight days after the diagnosis, but it is mostly that initial shock. Good Luck.</P>

 

[scrapper1264]

My son was not diagnosed until he was 5. He did have a cold until he was 10 months old and then had one every 3 or 4 months that normally turned into bronchitis. He was misdiagnosed with asthma since he did not have major digestive issues. I SO wish he would have been diagnosed earlier since he had so many nights coughing whenever he was sick. I felt so helpless! Once he got diagnosed he was much better with the proper treatment. Even though the diagnosis scared us, we were so thankful he was finally getting better.

 

[scrapper1264]

My son was not diagnosed until he was 5. He did have a cold until he was 10 months old and then had one every 3 or 4 months that normally turned into bronchitis. He was misdiagnosed with asthma since he did not have major digestive issues. I SO wish he would have been diagnosed earlier since he had so many nights coughing whenever he was sick. I felt so helpless! Once he got diagnosed he was much better with the proper treatment. Even though the diagnosis scared us, we were so thankful he was finally getting better.

 

[Mommafirst]

If the test is done correctly by a certified CF-affiliated lab, a 74 is clearly positive. However, there can be errors if the tech is not familiar with the testing. Being severely dehydrated from an illness could also cause an elevated (though I doubt high enough to be positive) result.

I hope that you get some answers. We all know how hard the diagnosis is. I'm sorry you are in this situation. Good luck.

 

[Mommafirst]

If the test is done correctly by a certified CF-affiliated lab, a 74 is clearly positive. However, there can be errors if the tech is not familiar with the testing. Being severely dehydrated from an illness could also cause an elevated (though I doubt high enough to be positive) result.

I hope that you get some answers. We all know how hard the diagnosis is. I'm sorry you are in this situation. Good luck.

 

[Andrea2XCFers]

My guys were 5 and 2 when diagnosed by sweat test. A regular lab did it on the older one and was positive, but the CF center wanted their own (that's when they did the other son, too). No lie, it's a devastating diagnosis, but the sooner you jump on it, the better off she'll be! You've already started educating yourself, and that's great! Stick together with your wife, and always remember that you are your child's only advocates! Get your questions ready, and always follow your gut instincts. I'll share the best advice we ever got: #1, never, ever relax on treatments (don't skip a day--ever) #2, do not treat your CFer different, or you'll end up with sickly brat! <img src="i/expressions/face-icon-small-blush.gif" border="0">) #3, As long as healthy, let em play sports and play in the warm rain! Live, live, live!

 

[Andrea2XCFers]

My guys were 5 and 2 when diagnosed by sweat test. A regular lab did it on the older one and was positive, but the CF center wanted their own (that's when they did the other son, too). No lie, it's a devastating diagnosis, but the sooner you jump on it, the better off she'll be! You've already started educating yourself, and that's great! Stick together with your wife, and always remember that you are your child's only advocates! Get your questions ready, and always follow your gut instincts. I'll share the best advice we ever got: #1, never, ever relax on treatments (don't skip a day--ever) #2, do not treat your CFer different, or you'll end up with sickly brat! <img src="i/expressions/face-icon-small-blush.gif" border="0">) #3, As long as healthy, let em play sports and play in the warm rain! Live, live, live!