My 2yo might have CF. A few questions-RESULTS IN! UPDATED! 1-16-08

[mom2Kierstyn]

My 2yo might have CF. A few questions

OK...I just got home from the sweat test. Her number was 25. Is that still too high even though it is considered negative? Or am I being overparanoid?

Valigirl21-my son is almost 8 and weighs 40 pounds- Not sure on his height though. He has always been small! I'll pray for your son!

Thanks everyone!

 

[mom2Kierstyn]

My 2yo might have CF. A few questions

OK...I just got home from the sweat test. Her number was 25. Is that still too high even though it is considered negative? Or am I being overparanoid?

Valigirl21-my son is almost 8 and weighs 40 pounds- Not sure on his height though. He has always been small! I'll pray for your son!

Thanks everyone!

 

[mom2Kierstyn]

My 2yo might have CF. A few questions

OK...I just got home from the sweat test. Her number was 25. Is that still too high even though it is considered negative? Or am I being overparanoid?

Valigirl21-my son is almost 8 and weighs 40 pounds- Not sure on his height though. He has always been small! I'll pray for your son!

Thanks everyone!

 

[mom2Kierstyn]

My 2yo might have CF. A few questions

OK...I just got home from the sweat test. Her number was 25. Is that still too high even though it is considered negative? Or am I being overparanoid?

Valigirl21-my son is almost 8 and weighs 40 pounds- Not sure on his height though. He has always been small! I'll pray for your son!

Thanks everyone!

 

[mom2Kierstyn]

My 2yo might have CF. A few questions

OK...I just got home from the sweat test. Her number was 25. Is that still too high even though it is considered negative? Or am I being overparanoid?

Valigirl21-my son is almost 8 and weighs 40 pounds- Not sure on his height though. He has always been small! I'll pray for your son!

Thanks everyone!

 

[Alyssa]

My 2yo might have CF. A few questions

geeze that's a tough one -- I would still push for full Ambry testing -- ask Steven on the Ambry post -- Family Section on the top is Ask Ambry -- go to the last page and hit reply and you can type your question to him. He just posted to another mother who got results of 7 & 8, he told her it was unlikely Ambry would find anything, because most A-typical cases were found with sweat tests in the 30's or higher.

I would tend to agree with him, <b>except</b> I know I recall two people on here for sure that have genetic proof of 2 genes and they have sweat tests of 14 and 23 -- so it can happen.

I would push for full testing, at the very least get the sweat test done again. Also check into the fecal fat testing just for good measure.

I know you mentioned the certified center being 3 hours away and Medicaid question, but I think it would be worth it to get a referral there or find out if you can go without a referral. They would be much more experienced at handling questionable sweat test results and or would be trusted to perform an accurate sweat test.

 

[Alyssa]

My 2yo might have CF. A few questions

geeze that's a tough one -- I would still push for full Ambry testing -- ask Steven on the Ambry post -- Family Section on the top is Ask Ambry -- go to the last page and hit reply and you can type your question to him. He just posted to another mother who got results of 7 & 8, he told her it was unlikely Ambry would find anything, because most A-typical cases were found with sweat tests in the 30's or higher.

I would tend to agree with him, <b>except</b> I know I recall two people on here for sure that have genetic proof of 2 genes and they have sweat tests of 14 and 23 -- so it can happen.

I would push for full testing, at the very least get the sweat test done again. Also check into the fecal fat testing just for good measure.

I know you mentioned the certified center being 3 hours away and Medicaid question, but I think it would be worth it to get a referral there or find out if you can go without a referral. They would be much more experienced at handling questionable sweat test results and or would be trusted to perform an accurate sweat test.

 

[Alyssa]

My 2yo might have CF. A few questions

geeze that's a tough one -- I would still push for full Ambry testing -- ask Steven on the Ambry post -- Family Section on the top is Ask Ambry -- go to the last page and hit reply and you can type your question to him. He just posted to another mother who got results of 7 & 8, he told her it was unlikely Ambry would find anything, because most A-typical cases were found with sweat tests in the 30's or higher.

I would tend to agree with him, <b>except</b> I know I recall two people on here for sure that have genetic proof of 2 genes and they have sweat tests of 14 and 23 -- so it can happen.

I would push for full testing, at the very least get the sweat test done again. Also check into the fecal fat testing just for good measure.

I know you mentioned the certified center being 3 hours away and Medicaid question, but I think it would be worth it to get a referral there or find out if you can go without a referral. They would be much more experienced at handling questionable sweat test results and or would be trusted to perform an accurate sweat test.

 

[Alyssa]

My 2yo might have CF. A few questions

geeze that's a tough one -- I would still push for full Ambry testing -- ask Steven on the Ambry post -- Family Section on the top is Ask Ambry -- go to the last page and hit reply and you can type your question to him. He just posted to another mother who got results of 7 & 8, he told her it was unlikely Ambry would find anything, because most A-typical cases were found with sweat tests in the 30's or higher.

I would tend to agree with him, <b>except</b> I know I recall two people on here for sure that have genetic proof of 2 genes and they have sweat tests of 14 and 23 -- so it can happen.

I would push for full testing, at the very least get the sweat test done again. Also check into the fecal fat testing just for good measure.

I know you mentioned the certified center being 3 hours away and Medicaid question, but I think it would be worth it to get a referral there or find out if you can go without a referral. They would be much more experienced at handling questionable sweat test results and or would be trusted to perform an accurate sweat test.

 

[Alyssa]

My 2yo might have CF. A few questions

geeze that's a tough one -- I would still push for full Ambry testing -- ask Steven on the Ambry post -- Family Section on the top is Ask Ambry -- go to the last page and hit reply and you can type your question to him. He just posted to another mother who got results of 7 & 8, he told her it was unlikely Ambry would find anything, because most A-typical cases were found with sweat tests in the 30's or higher.

I would tend to agree with him, <b>except</b> I know I recall two people on here for sure that have genetic proof of 2 genes and they have sweat tests of 14 and 23 -- so it can happen.

I would push for full testing, at the very least get the sweat test done again. Also check into the fecal fat testing just for good measure.

I know you mentioned the certified center being 3 hours away and Medicaid question, but I think it would be worth it to get a referral there or find out if you can go without a referral. They would be much more experienced at handling questionable sweat test results and or would be trusted to perform an accurate sweat test.

 

[Alyssa]

My 2yo might have CF. A few questions

I also see that Celiac hasn't been ruled out yet -- get confirmation on that first, because from what you describe Celiac is a very good possibility too.

Did they only do a blood test? If so they are only 85% certain - you still have a 15% chance that she has Celiac but the blood test didn't tell you. The most accurate way to tell is to do a colonoscopy to get a biopsy of the intestine -- don't know if they do that on babies - my daughter had it done, but she was 17 years old at the time.

 

[Alyssa]

My 2yo might have CF. A few questions

I also see that Celiac hasn't been ruled out yet -- get confirmation on that first, because from what you describe Celiac is a very good possibility too.

Did they only do a blood test? If so they are only 85% certain - you still have a 15% chance that she has Celiac but the blood test didn't tell you. The most accurate way to tell is to do a colonoscopy to get a biopsy of the intestine -- don't know if they do that on babies - my daughter had it done, but she was 17 years old at the time.

 

[Alyssa]

My 2yo might have CF. A few questions

I also see that Celiac hasn't been ruled out yet -- get confirmation on that first, because from what you describe Celiac is a very good possibility too.

Did they only do a blood test? If so they are only 85% certain - you still have a 15% chance that she has Celiac but the blood test didn't tell you. The most accurate way to tell is to do a colonoscopy to get a biopsy of the intestine -- don't know if they do that on babies - my daughter had it done, but she was 17 years old at the time.

 

[Alyssa]

My 2yo might have CF. A few questions

I also see that Celiac hasn't been ruled out yet -- get confirmation on that first, because from what you describe Celiac is a very good possibility too.

Did they only do a blood test? If so they are only 85% certain - you still have a 15% chance that she has Celiac but the blood test didn't tell you. The most accurate way to tell is to do a colonoscopy to get a biopsy of the intestine -- don't know if they do that on babies - my daughter had it done, but she was 17 years old at the time.

 

[Alyssa]

My 2yo might have CF. A few questions

I also see that Celiac hasn't been ruled out yet -- get confirmation on that first, because from what you describe Celiac is a very good possibility too.

Did they only do a blood test? If so they are only 85% certain - you still have a 15% chance that she has Celiac but the blood test didn't tell you. The most accurate way to tell is to do a colonoscopy to get a biopsy of the intestine -- don't know if they do that on babies - my daughter had it done, but she was 17 years old at the time.

 

[mom2Kierstyn]

My 2yo might have CF. A few questions

Thanks! My DDs Celiacs test came back negative. And it was a blood test. I am torn on the sweat test. I want to think it's a no but I also know that 25 isn't all that low. I have an appointment with the Dr next month so I'll ask about it. For the CF, what does full testing entail?

 

[mom2Kierstyn]

My 2yo might have CF. A few questions

Thanks! My DDs Celiacs test came back negative. And it was a blood test. I am torn on the sweat test. I want to think it's a no but I also know that 25 isn't all that low. I have an appointment with the Dr next month so I'll ask about it. For the CF, what does full testing entail?

 

[mom2Kierstyn]

My 2yo might have CF. A few questions

Thanks! My DDs Celiacs test came back negative. And it was a blood test. I am torn on the sweat test. I want to think it's a no but I also know that 25 isn't all that low. I have an appointment with the Dr next month so I'll ask about it. For the CF, what does full testing entail?

 

[mom2Kierstyn]

My 2yo might have CF. A few questions

Thanks! My DDs Celiacs test came back negative. And it was a blood test. I am torn on the sweat test. I want to think it's a no but I also know that 25 isn't all that low. I have an appointment with the Dr next month so I'll ask about it. For the CF, what does full testing entail?

 

[mom2Kierstyn]

My 2yo might have CF. A few questions

Thanks! My DDs Celiacs test came back negative. And it was a blood test. I am torn on the sweat test. I want to think it's a no but I also know that 25 isn't all that low. I have an appointment with the Dr next month so I'll ask about it. For the CF, what does full testing entail?