Ambry charges the insurance company well over $1,000 for the test, it is made available less expensive for people paying out of pocket. Additionaly, I have information about AMBRY (use to support them, even had my labs done there) but the way they analyze the CF mutation is rathr different and apparently not as accurate as theyclaim. I'll see if if can refresh that topic. I would recommend going with Quest diagnostics.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Not enough sweat.
- Thread starter kadensmom
- Start date
When I looked into the Ambry test for my daughter(2 1/2yr), I was told it would cost me roughly $3000.00. I had to meet my deductible first($2500.00) and then would possibly have to come up with $500 above the deductible. So.....I decided against if for now.
She has had three negative sweat tests, but has very definite pancreatic exocrine insufficiency. At this point they don't know what she has.
My son(6 mos) is scheduled for his second sweat test on Dec. 6. Please pray for him. He is having more difficulty than my daughter ever did.
Thanks for the info and support.
Edna
(daughter, 6yrs; daughter, 2 1/2ys ??CF; son, 6 mos. ??CF)
She has had three negative sweat tests, but has very definite pancreatic exocrine insufficiency. At this point they don't know what she has.
My son(6 mos) is scheduled for his second sweat test on Dec. 6. Please pray for him. He is having more difficulty than my daughter ever did.
Thanks for the info and support.
Edna
(daughter, 6yrs; daughter, 2 1/2ys ??CF; son, 6 mos. ??CF)
Edna,
I will be praying for a negative sweat test for your son. Has your daughter been using enzymes to help her gain weight? Sometimes, if doctor's can't get a definitive answer and it "appears" to be cf, they will treat the symptoms and give enzymes, etc.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
I will be praying for a negative sweat test for your son. Has your daughter been using enzymes to help her gain weight? Sometimes, if doctor's can't get a definitive answer and it "appears" to be cf, they will treat the symptoms and give enzymes, etc.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
Sharon,
Thank you for the note and your prayers. Yes, my daughter has been on enzymes since last Oct. She has done well with them. Within a few days of starting them, she had the first formed bowel movement of her life. She has gained weight fairly, and "normal" to the doctors.
I just still am amazed at how most of the doctors we have seen, are so quick to downplay the possibility of CF!! I have found that they are reluctant to even test for it. Why are they so weird about it??!!
I'm just so frustrated and confused!!
Edna,
daughter, 6yrs; daughter, almost 3 ??CF; son, 6mos. ??CF
Thank you for the note and your prayers. Yes, my daughter has been on enzymes since last Oct. She has done well with them. Within a few days of starting them, she had the first formed bowel movement of her life. She has gained weight fairly, and "normal" to the doctors.
I just still am amazed at how most of the doctors we have seen, are so quick to downplay the possibility of CF!! I have found that they are reluctant to even test for it. Why are they so weird about it??!!
I'm just so frustrated and confused!!
Edna,
daughter, 6yrs; daughter, almost 3 ??CF; son, 6mos. ??CF
We just got approved by the Kaiser Geneticist for a blood test! Hooray! Maybe we'll finally get some answers! Thanks for all the great advice and support! Its helped so much! Also, for Edna, I want you to know I'm praying for your little guy and your daughter, and of course, for you! I hate the not knowing! Its the worst. Let us know what you find out. I'll let everyone know what we learn from the blood test about Kaden.
Tammi
mom to Kaden (age 2, CF? Maybe we're actually going to find out!)
Tammi
mom to Kaden (age 2, CF? Maybe we're actually going to find out!)
Hello - Regarding this post about DS I have a question?
"DS had a normal sweat test -- 34; however, he was born with an intestinal blockage caused by meconium illeus and two blood tests later showed he has the cf mutation homozygous delta f508.
Do you mean you have a child with double 508B genes (and has CF) and his sweat test was 34?
Thank you.
Paula
"DS had a normal sweat test -- 34; however, he was born with an intestinal blockage caused by meconium illeus and two blood tests later showed he has the cf mutation homozygous delta f508.
Do you mean you have a child with double 508B genes (and has CF) and his sweat test was 34?
Thank you.
Paula
Paula, I can't answer for the parent you asked this question of but I can tell you this. On many occasions, children/adults will have a negative sweat test and then have CF mutations identitified by a CF blood test. Most often those CFers carry a mutation that is rare (the CFers who have a negative/low sweat test but a positive sweat test) but occasionally someone with a common CF mutation will still have a negative sweat test. Rare, very rare, but I have heard of it on more than one occasion.
Hope that helps a bit.
Hope that helps a bit.
Tammi,
Thanks for the concern and prayers. What symptoms has your son had?? I am always very curious to compare symptoms. My daughter (who will be 3yrs in Dec.) has always had smelly, mucousy poops; lots of gas; HUGE appetite; and she sweats a lot and always looks sort of pale and almost yellow-ish. She also has major tooth enamel problems. The enamel is coming off in chunks. She stays sick and runs fevers(sometimes for no apparent reason) constantly. She sleeps anywhere from 2-4 hours at naptime everyday, and will still take another nap in the evening.
Now, all of this I am comparing to my oldest child. She is 6yrs, 4ft 3in, 65lbs. She is robust and very healthy.
I'm also still looking into the genetic testing. When is yours scheduled? Let us know what you find out.
May our God be with you and your little son, and may you get answers.
Edna
Thanks for the concern and prayers. What symptoms has your son had?? I am always very curious to compare symptoms. My daughter (who will be 3yrs in Dec.) has always had smelly, mucousy poops; lots of gas; HUGE appetite; and she sweats a lot and always looks sort of pale and almost yellow-ish. She also has major tooth enamel problems. The enamel is coming off in chunks. She stays sick and runs fevers(sometimes for no apparent reason) constantly. She sleeps anywhere from 2-4 hours at naptime everyday, and will still take another nap in the evening.
Now, all of this I am comparing to my oldest child. She is 6yrs, 4ft 3in, 65lbs. She is robust and very healthy.
I'm also still looking into the genetic testing. When is yours scheduled? Let us know what you find out.
May our God be with you and your little son, and may you get answers.
Edna
Hi Edna,
My son has always been small for his age, (never on the charts), and has had a really congested cough most of his life. He's super prone to sinus infections. Other than that, he's really pretty healthy. I was really surprised when the doctor first mentioned CF at a routine 2 year check up. The doctor's biggest concern is his size, but all my other kids are small, so I never thought anything of it. My biggest concern at the moment, besides what the outcome of this will mean for my two year old, is what it could mean for my other kids. Especially my 11 year old son who has struggled with allergies and asthma most of his life, as well as having been hospitalized for RSV as a toddler, and many bouts of pnuemonia. He's really small too, being 11 years old and weighing only 49 pounds. I'm worried that if the baby has it, that my other kids might have it as well! Our blood work was scheduled for yesterday, but someone messed up on the paperwork end of it, and the order wasn't sent to the lab, so we have to go back today. They are checking for the most common mutations, and they think it will be pretty accurate since the sweat test was a flop. I know how discouraging this can be for you. We're feeling it too. I hope you get some answers soon! Its horrible to have your little one sick, especially not knowing why.
Tammi
Kaden's mom
My son has always been small for his age, (never on the charts), and has had a really congested cough most of his life. He's super prone to sinus infections. Other than that, he's really pretty healthy. I was really surprised when the doctor first mentioned CF at a routine 2 year check up. The doctor's biggest concern is his size, but all my other kids are small, so I never thought anything of it. My biggest concern at the moment, besides what the outcome of this will mean for my two year old, is what it could mean for my other kids. Especially my 11 year old son who has struggled with allergies and asthma most of his life, as well as having been hospitalized for RSV as a toddler, and many bouts of pnuemonia. He's really small too, being 11 years old and weighing only 49 pounds. I'm worried that if the baby has it, that my other kids might have it as well! Our blood work was scheduled for yesterday, but someone messed up on the paperwork end of it, and the order wasn't sent to the lab, so we have to go back today. They are checking for the most common mutations, and they think it will be pretty accurate since the sweat test was a flop. I know how discouraging this can be for you. We're feeling it too. I hope you get some answers soon! Its horrible to have your little one sick, especially not knowing why.
Tammi
Kaden's mom
Tammi,
If the blood work comes back only identifying one mutation, or even if it doesn't identify any, I would request the test through Quest to be on the safe side. Or, if the dr refuses that, I'd request that they sweat test your 11 year old. At his age, they should be able to get an accurate sweat test.
Good luck!
If the blood work comes back only identifying one mutation, or even if it doesn't identify any, I would request the test through Quest to be on the safe side. Or, if the dr refuses that, I'd request that they sweat test your 11 year old. At his age, they should be able to get an accurate sweat test.
Good luck!
I've already requested the sweat test for my 11 year old, and they are planning to test him after they see what the blood work shows on Kaden. You're right, regaurdless of what the blood tests show on Kaden, I will still push for a sweat test for the older one. Thanks for the advice.
Tammi
Tammi