I brought DD in for sweat test this morning. She had one on Monday too but didn't collect enough sweat. So they got just barely enough for one test today. This was done at a lab that does them for the CF center. Anyway, I just got the call from my doc that it came back in the "high normal" range. The number was 37. They are going to retest on Tuesday. I can't stand this waiting anymore. The only reason she had the test was because she's not gaining weight well and I asked the doctor for it. It wasn't even something he was considering yet. She did develop a cough a couple weeks ago but it only lasted a couple days and now she just has some occasional phlegm. Her poops seem normal to me. The only thing I notice about them is that they will go from formed poops to more loose. So they are not very consistent. I don't notice oil in them and they don't look greasy but sometimes I will see some mucus. I just don't know what to think. Everyone keeps telling me not to worry too much cause it was in the "normal" range, but they haven't done the research that I have! Any thoughts and advice would be greatly appreciated! Thanks!
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I need some advice on sweat test numbers please!
- Thread starter anonymous
- Start date
I am sorry you are going through this. Does she taste salty if you kiss her forehead? Unfortunately, with CF, you can always get a false negative sweat test. It has happened lots of times and will continue to happen, I am afraid. Does her poop look orange-y to you or smell like rotten sweet oranges? I know that is a really weird description but that was always what it was lilke when Emily was little. Is she always hungry? Does she ever sound wheezy? I am just trying to think of things that were obvious about Emily when she was little. She is almost 21 now and doing pretty well. She returns to Northeastern University in Boston in a couple of weeks where she is studying American Sign Language. She finished last semester on the Dean's list and hopes to go for her Master's and ultimately be able able to teach deaf children.Let us know how the testing goes and feel free to ask any questions. No question is too personal or too "pushy" when you are talking about your child and your concerns for her.<img src="i/expressions/face-icon-small-happy.gif" border="0">
I have kissed her forehead after licking my lips and she doesn't tase salty at all. Also her poop has never been the orange or yellow that I've read about. Just the normal brown with some occasional mucus if it's on the looser side. It sometimes will be "shiny" as well but nothing that looks like "fat" or grease. Also, the smell is pretty normal as far as poop goes. <img src="i/expressions/face-icon-small-smile.gif" border="0"> As far as her appetite, I wold say it's average. She eats at the normal times and alot of the time doesn't finish what we've given her. I don't think she sounds wheezy, just has the phlegmy sound in her throat for the past couple of weeks. I don't know if that could be caused by something else, but I'm always clearing my throat too. Sometimes I think that it may be caused by a sensitivity to milk. She's had ezcema since she was about 5 months old and exhibits some of the other "signs" of allergy. I know that allergies to milk can cause mucus in the stools, failure to gain weight and congestion and the eczema. Maybe I'm just grasping at straws. I don't know. I appreciate your reply! I'm glad to hear that your daughter is doing well!
It doesn't sound like CF, but I'm not a doctor. I would go back for the sweat test just for piece of mind but keep looking until you find out what it is. No one knows your child better than you and no one is going to be a better advocate for her than you! Keep fighting for her and hang in there! Let us know!
Well, we had my DD's test this morning and it came back normal. The number was an 18. The guy who did it today told me that it could have some back higher because they "pooled" the sweat from different tests. Meaning the day that she got the 37 the guy did 3 seperate tests and combined the sweat from all of them to get enough. I don't know if that's true, but considering her only "symptom" was her being small I'm fairly certain this wasn't a false negative. Thanks for all the support. I really appreciate it. I will never forget this experience and I will be praying for a cure along with all of you.Thanks again!
i hope someone is still paying attention to this post! my daughter was born and they said that she may have cf according to the screening. we took her for a sweat test, they couldnt collect enough, had to take her back at one month of age. her test came back 26 we thought that was great. well, my wife and i wanted to have another test so we both got tested. i came back a carrier she did not. a dr. we were dealing with informed us of another test, i think its called the ambrey genetics test, for my wife to take, they test for all the mutations not just the 85 (i think there are a thousand). so any way, her test came back positive after the standard one said she wasnt. NOW, my daughter was retested, we got the results back and she has her mutation as well. so after this long story ive told, duaghter has normal sweat test and c.f. i wonder why they dont offer a test to parents BEFORE they get pregnant? i got these results today. anyone have a similar story? if so, what should i expect? mild case possibly?
Question for you.....was all this testing done at a cf care center? They would have all these answers for you and be able to allay some of your fears with responses that you know are going to be accurate and not leave any hanging questions in your mind. Unfortunately, the general population of physicians don't have a very good knowledge of CF (just a general one) and a lot of times, give inaccurate and frightening information. The only place you are going to get honest accurate answers to all your questions is from a CF Care Center. You can locate the one nearest to you by going to cff.org. Good luck!<img src="i/expressions/face-icon-small-happy.gif" border="0">
am i at a cf center, no, but it is a major hospital with a pulminary dr etc... i do have an appointment tomorrow to really get into all of this and find out what we can. the persons im meeting with are- the head of pulminolgy, a genetic counselor and some others, if youd like i can share this info with you!
In regards to the post about offering the testing PRIOR to parents getting pregnant they should be doing this now since it is the standard of care according to ACOG. They are not in all cases (mine included). We are filing a complaint with the board of medicine in our state. We are also considering legal action against our doctor (long story but they basically told me they "ran out of time" at my preconception visit and they didn't have a chance to discuss genetic testing - but sorry they "typically" do). That is just unacceptable. More needs to be done on educating people on preconception CF carrier testing. It all comes down to money and that is just sad.
Hi,
i'm not sure what stae you are in but in NJ while you are pregnant you are tested (like i was)but they only test for 20 genes not the thousands that are out there my son was three weeks when we got the call he has a gene that the dr's can't give me a number for he has one of those thousands that are out there due to my son having cf my sister in law was tested for the thousands instead of the 20 they test for until you know for sure it's a roller coaster
good luck
jason's mom
i'm not sure what stae you are in but in NJ while you are pregnant you are tested (like i was)but they only test for 20 genes not the thousands that are out there my son was three weeks when we got the call he has a gene that the dr's can't give me a number for he has one of those thousands that are out there due to my son having cf my sister in law was tested for the thousands instead of the 20 they test for until you know for sure it's a roller coaster
good luck
jason's mom
im actually in pa, the only time they said anything about testing for any disease was when my wife was preg. our opinion by then its to late because we dont believe in abortion. im going to bring up at my visit today why they didnt offer or say anything about a test, im really going crazy about all this.
I am from MA. I totally relate to the last post. We proceeded with our pregancy after finding out at 19 weeks. We have a beautiful baby boy I would not trade for all the world but am sad that he is going to have to endure so much more in his life that typical. They need to offer preconception testing period! My two cousins went to be tested and their doctor's response was "we don't test you until you are already pregnant". What kind of answer is that? They pushed their doctor to give them the carrier test and she did - but is should NOT be this way... I just don't get it. If someone can make me understand it better as to why this is not a standard test when you turn 18 or 21 than please do so....
Hi all,
Our daughter has had 2 high sweet tests. She was a 74 and a 60. She has tested negative on all blood tests, including the ambry. Her specialist is assuming that hers is a new mutation. We are in shock and sad. She is 4. She has had failure to thrive and was below the 3% in height and weight. She has started with pulimcort and a nebulizer for breathing, and pancrecarb enzymes. She grew 2 inches in 1 month on the therapy and gained 1 pound. We feel as if we are stumbeling in the dark. We are so unsure as to how to proceed with her care. Do we isolate her, allow no germs. What kind of diet. We have taken our older daughter who is almost 7 out of school to homeschool, we just want to limit the colds. We just had a baby, and she was tested at birth through ambry. She is negative, and shows no signs of CF. Our daughter with CF, has loose stools like 7 a day. With the enzymes that has decreased to 1-2 she eats like a horse, and is tired easily. Any thoughts...................I am still holding out hope, I know, I shouldn't but I am. Thanks in advance.
<img src="http://img.photobucket.com/albums/v257/applehillgardner/Signature%20Parade/hugs_to_you_beth.gif"><img src="i/expressions/brokenheart.gif" border="0">
Our daughter has had 2 high sweet tests. She was a 74 and a 60. She has tested negative on all blood tests, including the ambry. Her specialist is assuming that hers is a new mutation. We are in shock and sad. She is 4. She has had failure to thrive and was below the 3% in height and weight. She has started with pulimcort and a nebulizer for breathing, and pancrecarb enzymes. She grew 2 inches in 1 month on the therapy and gained 1 pound. We feel as if we are stumbeling in the dark. We are so unsure as to how to proceed with her care. Do we isolate her, allow no germs. What kind of diet. We have taken our older daughter who is almost 7 out of school to homeschool, we just want to limit the colds. We just had a baby, and she was tested at birth through ambry. She is negative, and shows no signs of CF. Our daughter with CF, has loose stools like 7 a day. With the enzymes that has decreased to 1-2 she eats like a horse, and is tired easily. Any thoughts...................I am still holding out hope, I know, I shouldn't but I am. Thanks in advance.
<img src="http://img.photobucket.com/albums/v257/applehillgardner/Signature%20Parade/hugs_to_you_beth.gif"><img src="i/expressions/brokenheart.gif" border="0">
I know it doesnt seem like it, but it is soooo good that she was diagnosed! She is already improving and it sounds like her diagnosis is recent. Now that you know what she has you can properly treat it. I dont know how it feels to be in your position because I am a CFer and so I dont know what it is like to be a parent of a CFer, but I have to say that it is soooo important that you found out now. I was diagnosed later in life and would have been saved a lot of trouble if I had been diagnosed as a young child. As for germs there is no way to totally protect her and being exposed to germs is actually good to some extent because it builds up her immune system. I know a lot of people on this site are very opposed to sheltering a CF child and I have to say I am in agreement. I know you of course want her to stay healthy and want her to avoid germs, but she is not so fragile that she can not lead a normal life. As for diet a high fat high calorie high salt diet is best. If you have not been to an accredited CF center then that is a must they will be able to explain everything your precious daughter will need and the best way to care for her. Also if you go to cff.org they have a live webcast all about what a diet for a CFer shold consist of. Its under live webcast...then find the one about nutrition. I know it must be a very difficult time right now, but the routine of the meds and enzymes will get easier and become a way of life eventually. Oh one more thing exercise is GREAT for the lungs so get her to run around or swim or find some activity she likes that keeps her moving so that she can cough up the mucus easier. If you have any other questions please post because everyone here is going through similar things and you are not alone!
Hi new CF mom,
I agree with the last poster....Now that your child is diagnosed, she can get the treatment needed to lead a fairly normal healthy as possible life. The urge to keep her as safe as possible is normal, but don't put her in a "bubble". Think quality of life, not quantity!
When Emily was diagnosed at two days of age, our initial reposne ewas the same,...keep her away from everyone and germs will be easier to handle...wash everything...sanitize everything...boil everything...This is very unrealistic. After a fairly short time, we realized this would be a really horrible life we were setting up for her. We tried to relax and think "quality", not quantity and that has been our family motto. Emily is almost 21, a sophomore on the Dean's list at Northeastern University in Boston, has a steady boyfriend that we thoroughly approve of and has quality and quantity!
Try to relax...let your 7 year old return to her school and friends. Your little one will be exposed to germs no matter how hard you try to let that not happen. She needs to be exposed to build up immunity. It will help later when she is trying to fight infections for her to have a stronger immune system if she starts to build it now. Let us know how things are going! Hang in there!
I agree with the last poster....Now that your child is diagnosed, she can get the treatment needed to lead a fairly normal healthy as possible life. The urge to keep her as safe as possible is normal, but don't put her in a "bubble". Think quality of life, not quantity!
When Emily was diagnosed at two days of age, our initial reposne ewas the same,...keep her away from everyone and germs will be easier to handle...wash everything...sanitize everything...boil everything...This is very unrealistic. After a fairly short time, we realized this would be a really horrible life we were setting up for her. We tried to relax and think "quality", not quantity and that has been our family motto. Emily is almost 21, a sophomore on the Dean's list at Northeastern University in Boston, has a steady boyfriend that we thoroughly approve of and has quality and quantity!
Try to relax...let your 7 year old return to her school and friends. Your little one will be exposed to germs no matter how hard you try to let that not happen. She needs to be exposed to build up immunity. It will help later when she is trying to fight infections for her to have a stronger immune system if she starts to build it now. Let us know how things are going! Hang in there!
Hi There,
I really do symathize with you as it is a awful feeling what you are going through.
My son was diagnosed through a newborn screening and he showed the most common CF gene.
He was also screaming for food every single second and was not gaining weight well.
I was horrified as I was a first time mother and thought I was just not doing anything correctly!
His sweat test came back as 63 and 69 for sodium which was positive.
I was a bit confused because his chloride was 83 and 89?
I am assuming that it is the sodium that they go by as everyone else seems to talk about those figures more?
Anyhow, since the diganosis at 2 weeks old, I have had a happy, content and wonderful little boy and I am grateful for the early diganosis as I have learn't a lot but feel I am doing the best to keep him as healthy as possible.
Best of Luck to you!
Rebekah
Mom to Matt 17mths w/CF
I really do symathize with you as it is a awful feeling what you are going through.
My son was diagnosed through a newborn screening and he showed the most common CF gene.
He was also screaming for food every single second and was not gaining weight well.
I was horrified as I was a first time mother and thought I was just not doing anything correctly!
His sweat test came back as 63 and 69 for sodium which was positive.
I was a bit confused because his chloride was 83 and 89?
I am assuming that it is the sodium that they go by as everyone else seems to talk about those figures more?
Anyhow, since the diganosis at 2 weeks old, I have had a happy, content and wonderful little boy and I am grateful for the early diganosis as I have learn't a lot but feel I am doing the best to keep him as healthy as possible.
Best of Luck to you!
Rebekah
Mom to Matt 17mths w/CF