My 7 year old daughter had her sweat test done today and we got the results about 2:30 this afternoon that it was negative. We are very blessed, thank all of you so much for all of your helpful information during this stressful time. Thoughts and prayers are with you all and wishing you the best of outcomes. I will continue to browse here to learn more. Even though she does not have cf...there is something wrong with her that keeps causing all of this respiratory junk...I just have to keep looking. Thanks again, Trishwhis.
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.
sweat test done and results back today
- Thread starter anonymous
- Start date
That is wonderful news and I wish you the best in trying to determine what is causing the respriatory problems. I am also glad to hear you will continue browsing, I miss people when they seem to disappear after the results. Of course, it does make sense but you get talking to people and then they are gone. I wish your family the best!
Julie (wife to Mark 24 w/CF)
Julie (wife to Mark 24 w/CF)
Great news, Trishwhis! Any news on the next line of testing? (I'm the poster w/the non-cf child). This was the work-up in order that they did on my ds. First, allergy testing. When that came back neg, they did a very basic immune system work-up. When that came back neg, they did the sweat test. Next was the first ct scan, followed by the second after he finished his second round of long-term antibiotics (each 4-6 wks). That was followed by surgery. After the surgery, he was allergy tested again, this time positive (this time 64 skin pricks and 9 sub-dermals vs 40 skin pricks and 7 sub-dermals first time). He started allergy shots, then had a very extensive immune work up that took several months and blood tests to complete. As part of that, when it was determined that his prevnar vaccine had not "taken", he was given the pneumovax and then retested to make sure his body had produced titres. During that same period, he had the genetic testing for cf. When everything except the allergy and prevnar titre testing came back negative, that was the point they determined that he should be tested for PCD (aka immotile cilia or kartagener's when it involves reversal of organs). If they haven't done an extensive immune work up and thorough allergy testing, I'd request those since they're non-invasive (skin pricks may be uncomfortable but they're quick and blood tests while a pain, are better than surgery). I'd also request a repeat ct when she completes her course of antibiotics. Finally, if they do sinus surgery on her, be sure to request IN ADVANCE that they do a cilia biopsy to determine whether or not her cilia are functioning properly. And, ask that they culture her sinuses to check for a fungal infection or a resistant strain of bacteria, both of which can cause infections that are difficult to treat. EIther of these are distinct possibilities in my ds's case since they didn't do a culture when they did the surgery. He's not even 7 yet but has been on 1 course of IV antibiotics and over 50 courses of oral antibiotics each ranging from 5 days (zithromax) to 6 wks. He's been on 7 courses alone that lasted 3-6 wks each. Frequent antibiotic use puts him at higher risk for resistant bacteria or fungal infection. If you want more info on fungal infections, check out Mayo clinic's site. Another thing that they should strongly consider is reflux as it can cause significant damage to the sinuses if the child refluxes that high. We use prevacid for that. Daycare attendance and the constant colds that come with that can also be a major contributor. I can't remember whether you said she attended daycare or not? On PCD, while not EVERY child with it has lung complications at birth or problems during infancy, the great majority do so if your dd had a relatively easy birth and was healthy as an infant, you may want to skip the biopsy for now. My ds spent 3 days in the NICU for fevers and mild respiratory distress after his birth and was constantly sick during infancy. I hope you don't mind my posting all of this. I just wish that someone had told me what all to request at the time of my ds's original sinus ct so I'd know what to ask/request, etc. As it is, the two things they did not do for my ds are the two things that really need to be done during surgery - culture and cilia biopsy. We do NOT want to put him through that again unless absolutely necessary. I hope that helps. Good luck getting answers for your dd and CONGRATS on the negative sweat test!!! One more thing, you may want to ask what her actual # was. Two other things we found helpful - switching to advair (250 spring/summer, 500 fall/winter) and doing nasal washes.
Thank you all...to the poster with the non cf child...thank you for all of the information. My child had already been tested for allergies...found positive..and was undergoing allergy shots 2 twice a week when they wouldn't give them to her because her cough was always so bad. The pulm is treating her for reflux with Prevacid and I can't tell if that is what has improved her some or the course of antibiotics she is on. If she does have to have the surgery I will for sure do those things you recommended. Again thanks so much.