Thanks for the information!...
Hello Krista. The polyps should have been a big tip off to the ENT and doctor to do further testing. Demand to have your son tested at an accredited center. Hugs....
Hello Eye2797! You got some good advice from Darkies Gem. I would definately have your son tested at an accredited CF center (sweat tested), there are other tests too. Fecal fat test, chest xrays,...
Hello Dawn and welcome to Healing Well! There are disorders that occur with defects in the cilia. Just google cilia disease/disorders and you will get some info. Here is one link:...
I think this quote sums up how we try to deal with CF... "Keep your face to the sunshine and you cannot see the shadows" ...
Hello Mark and welcome to Healing Well! Sounds like your niece is getting all the correct testing done and hopefully will do fine. Cystic Fibrosis is progressive. How fast or in what varying degrees...
Darkies gem, hope you get your pfts up and you start to feel better. We have had one of the wettest springs here in Oklahoma this year. And when it gets hot, it gets hot, something we are not looking...
Hope you get to feeling better and your hospital stay is a quick one! Yep, I think that soap may have not helped the sore eyes...;)...
Hello concernedforhim and welcome to Healing Well! I would definately request that the sweat test be given to your son. Make sure it is done at an accredited center. At 22 months, I would think that...
Hello Vera. Just click on your highlighted name (or anyones) and the function will appear to see what their posts have been. You must be logged in to access this. My son's hands and feet are always...
Welcome Vera! Your daughter and grandaughter has a wonderful support system, that being YOU! One of the main reasons I had my son tested was the salty skin/sweat. He would have salt crystals all in...
Hello Jaelor and welcome to Healing Well! You should have the results of the sweat test the same day. Make sure it is being done at an accredited CF center/facility. Hope your son starts to feel...
My son occasionally misses his treatments when he is just plain tired or has had a full day. We try to keep a plan of completing at least 80 percent of his treatments per week....
Hello Neely and welcome back! Sounds like you have a life full of wonderful and special people! /community/emoticons/smile.gif ...
Hello momwith3 and welcome to Healing Well! In ordering the sweat test and ct scan, it sounds as if your doctor is on the right track to finding a diagnosis/cause for your son's illnesses. There are...
Hello everyone and welcome to HW! Mom2jjk, Emily is right in saying that everyone with CF can present symptoms differently. Your doctor will know what to test for and "put all the pieces" together to...
Hello Hayley and welcome to Healing Well! My youngest child, son Treyson has CF, he is entering adolescence and emotions are changing. You are getting a wealth of knowledge and feedback here. The...
Hello Pat and welcome to Healing Well. /community/emoticons/smile.gif There are several tests to do for a CF diagnosis. First the sweat test, possibly a fat fecal, throat swab/cultures a dna gene...
Hello Raisen and welcome to Healing Well! Can't help ya on the Chicago tips, hopefully someone will chime in....
Hello Ducky and welcome to HW! about the sweat tests (in my experience), two tests on different days are usually required in determining a diagnosis. What I have been told is that there can be a...
Hello Smith and welcome to HW! As Jodi advised, get a sweat test and a fecal fat test done, they are painless and will help the doctors in findina a diagnosis. Keep us posted! Cheers!...
Hello Ann and welcome to Healing Well! Sounds like you have a lot on your plate right now. CF can present in so many different ways. The doctor looks at the whole spectrum of symptoms and test...
Hello Alan and welcome to Healing Well. Just checking to see if you ran your article/link in the resource directory and got an ok by the forum administrater to post it here (check the forum rules to...
Way to go Leah! Sounds like she is doing great! Gage is all healed up now and Trace has put on a few pounds, he goes to his pulmo on the 22'nd (his 3 month checkup and yearly tests). Your welcome Sea...
My son is 12 and weighs in at 60 lbs....
Hello kmsmom! I hope you do get some answers soon. Not every state performs the NPD and I heard that it is uncomfortable for children. How is your daughter's weight and did she have a fecal fat...
Hello Cathy! Hope all has been well with you and your family! I missed seeing your posts! /community/emoticons/smile.gif ...
Hello and welcome to Healing Well! It sounds like you do have some of the symptoms for CF that In my opinion warrants an appointment with a doctor to voice your concerns. I would not label you as...
Hello. Make sure your daughter is seeing a doctor that is familiar with CF and or affliated/accredited with/to a CF center. I was told there are over 1500 mutations, with more being discovered every...
Hello. My son has had two DNA genetic tests done. The first with Genzyme (32 panel) with no found mutations. Than he went on to have the amplified Ambry test and still came back with no known...
Hello and welcome to HW! Like Chaser suggested, make sure the sweat tests were done at an accredited CF center. For more info on Ambry their website is www.ambrygen.com . My son had the Genzyme test...
Just dropping by to say Hello and welcome to Healing Well Audrey! High School can be an emotional adjustment, hang in there /community/emoticons/smile.gif !...
Hello CFmom and welcome to Healing Well! How old is your child with CF? Feel free to ask questions, we have a lot of knowledgeable people here! On the right of your screen are the links for the forum...
I would demand that the sweat test be performed (at an accredited place), you are the parent and concerned about your child, you are your child's advocate. My son was being tested years ago for...
Hello KT's mom. Sorry about your diagnosis for your child. Now you can concentrate on keeping her well. The hardest part is the "not knowing" and waiting for test results. At least you know for sure...
Hello again Jay. What was the results of your son's sweat tests? Good to hear that it is not likely that your son has CF and thanks for devoting your time to spreading awareness to the public of this...
Hello Andrew, hope you are feeling better. I will check on the yahoo messenger sometime today (I don't really like down loading a lot of stuff).... I can pm you my email addy, just change your...
Hello Butterfly_eyes and welcome to HW! Feel free to ask questions galore, there will be someone here to help you out. Do you have a support system (family members)? Here is a great site that has a...
Hello Jay and welcome to HW! Lot of good information posted above. CF can be difficult to diagnose at times and the waiting can be unbearable, I feel for you and your wife. Make sure the sweat test...
Hello KT'smom and welcome to HW! Was your child sweat tested at a or with an accredited affiliated CF clinic/team? What method did they use to sweat test your child? Gibson/Cooke is the prefered...
Hello Andrew. Sounds like you are doing very well! What colleges have you been looking at? You are a Libra, just like me (my bday is Oct. 16). I would like to see your picture (I am sure you will not...
Hello Sea. Lea is getting at the "fun" stage, becoming mobile.... I am not really sure about the Sats question, it does sound like she is doing great! /community/emoticons/smile.gif ...
He will be 12 on Sept. 9'th. He weighed in at 58 lbs. I have him on the Carnation drinks and he was doing well with drinking them at first, but the past several weeks he says they make him sick to...
Hello Emily and welcome to Healing Well! You sound like a very active girl, that is wonderful! My son just had his 3 month checkup and all is well. He isn't as active as most, we are working on that...
Hello and welcome to HW, HCUF! What grade are you going into this fall? You sound like a very helpful and intelligent young person! /community/emoticons/smile.gif How long have you been swimming on a...
Hello Hon and welcome to Healing Well! That is great that your son stays so active! Gatorade has a newer drink out called Endurance, it has almost double the sodium as the original Gatorade. You...
Welcome to HW! Here is some information that may help you: http://www.cysticfibrosismedicine.com/htmldocs/CFText/genetics.htm Phenotypic expression Since sweat testing was introduced there have been...
Welcome to Healing Well, Kelly. I am not really familiar with the GI issues yet. I can really sympathize with you and your daughter, it sounds like she goes through so much. I do hope that you all...
Hello Sharron and welcome! I don't know about living abroad - hopefully someone will chime in....
Hello Erica and welcome to HW! My condolences go out to you for your cousin, Brandi. Not really sure how others deal with CF, but as for me and my youngest son (who has CF) and our family, we take...