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  1. M

    Can anyone explain these genes?

    We just had our daughters genetics rerun and her unidentified gene has been identified. She has N1303K which we knew, and del e22-23 which was the unidentified gene. The cf doc said that the second gene is along the same lines as deltaf508. Aside from that and telling us they are rare he...
  2. M

    How long for culture results?

    My DD had a broncoscopy last Tuesday on the 15th. The CF doc said it could take 2 weeks to get results on some of the tests they were running. Today on the 21st the CF nurse called saying the results were in and she "only cultured staph and Stenotrophomonas". When I asked her about the other...
  3. M

    Coughing, infection cycle..

    So my oldest DD is done with IV's AGAIN. We have been on this horribe cycle of meds. She will do oral antibiotics with little effect her PFT's drop to 30%, she starts IV meds, after those are done Dr. puts her on Cayston. After about a month of Cayston being done she is coughing horribly...
  4. M

    Port needle issues..

    My DD is on IV's right now through her port. She typically uses a half inch but the hospital and visiting nurses only carry a .75 inch. Which in the hospital is ok because then they can use the bio patch underneath. Lately though the needles have been failing. Once when we were in the...
  5. M

    Vision problems with CF?

    My oldest DD has had significant vision loss in the past few months. We took her to get her eyes checked yesterday and the doctor said he thinks she is having possible nerological issues in the back of her eyes. The best he can get her vision with glasses is 20/30 and that's also with...
  6. M

    Contiunal glucose monitor?

    My oldest DD has CFRD. A fwe months ago we were looking at a possible insulin pump. Then she didn't need insulin at all. Now she is back on insulin. Her blood sugars go from 59 up to over 600 in the matter of 2 hours, once she gets Novalog her sugars will drop back down to 300's in an hr...
  7. M

    Failed port needles and bad rash from the tape.

    My oldest DD just got her new port a cath a few weeks ago. We are on week 3 of IV meds and her second needle failed. First time was when the home health nurse was here and she tried to flush her with heprin after her Tobi ran through. The saline went just fine but the heprin wouldn't go...
  8. M

    Monderate staph?

    So my oldest DD was admitted Tuesday after her PFT's took a serious nose dive. She went from mid 70% down to 45% in a month. This was after she had been on an oral antibiotic. After about 3 days of Tobramycin and Fortaz her PFT's went back up to mid 70's. She is home now on IV's and goes back in...
  9. M

    Skin its for the vest machine?

    Has anyone here gotten the skin it covers for their vest machines? My oldest just got her dino machine changed with the new smaller one and I saw the hand out for the skin it that was included in the cost of the machine. We got skin it's for the girls glucose monitors and they stick really well...
  10. M

    Dry cough?

    My DD and DS have been having a dry cough lately. My DD's has lasted about 3 months. It is totally spiratic and just sounds painful. She is not coughing up anything. Last CF visit last month I addressed this with the doc. While in clinic she coughed a few times so he heard her coughing. Her...
  11. M

    Vitamins...

    The cf clinic called and said my oldest DD's vit D is low and she should now take two source CF's. She is already taking one source cf, 1 vit D3 2,000 IU's, faxseed, garlic, fish oil, and vit C. I told her she was supposed to take a second source CF and she groaned. So now I'm in search of...
  12. M

    Methotrexate anyone?

    I was curious if any one here had any experience with this medication? As I had posted before my DD's joints are swelling. After a long drawn out time we finally got into see a rheumatologist. They put her on Melxicam. After a month of being on it she is still flaring up, unable to move. So now...
  13. M

    Is this a CF issue?

    <P>Wierd question time. Is joint pain in a slow growing 13 yr old part of CF?</P> <P></P> <P>My DD with CF for almost a year now has been having random joint pain. Her knee has swelled up about twice it's original size twice. This last time she was not able to put any weight on it at all.Before...
  14. M

    Can anyone tell me about Utah?

    <P>I was wondering if anyone ever lived or lives in Utah and uses the CF clinic in Salt Lake City? </P> <P>We are looking at moving and curious about Utah since we've never lived there before. Also any other information like weather and stuff to do. </P> <P></P> <P>Currently we are in WA and the...
  15. M

    CF and Crohn's disease?

    <P>  My son who is 9 has CF and was recently diagnosed with Crohn's.  It was a very long hard road to getting this diagnosis.  After having moved several times in 6 yrs and seeing several different GI docs we finally found one that was willing to look deeper.  He is now a totally different kid! ...
  16. M

    Anyone delt with this fungus before?

    Hey everyone, I haven't been around in awhile because my computer dumped. I finally found my way back here and have tons of questions. First being about this fungus.My daughter just cultured zygomycetes. Does anyone have any type of first hand information about this fungus? Kidney stones...
  17. M

    Alex saw endo today.. CFRD?

    Alex went to the Endo doc today. He was very helpful and full of new information for us. Next week we get to hook her up for a 24 hr/ish glucose monitor. I don't hold out much hope. Considering the fact that when we got home I checked her blood sugar and it was 152 at 4 hrs after her feeding...
  18. M

    Tired of fighting.

    Due to my husbands job we have moved around quiet a bit. Our longest time spent with one clinic was 5 years. During that time we managed to get a great repore with the doctor and nurses. If I called and said XYZ was going on they'd either call in meds or have us bring who ever it was in for a...
  19. M

    New here wanted to say HI!

    Hi, my name is Jen. I have 4 kids oldest 3 with CF. 2 girls and 2 boys in that order. The oldest is 11 and youngest is 6. We've been living with knowing the disease for 10 years. So far we've been pretty lucky. No major infections or hopsital stays (knock on wood!) aside from the usual...
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