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  1. J

    False negative sputum culture?

    Thanks everyone. He was able to cough up a good sample. I left a message with clinic to ensure they did let it grow before finalizing. I can log on to see results which say final on the same day as culture. Maybe they can see something I cannot but I am double checking with the clinic.
  2. J

    False negative sputum culture?

    Thanks jshet. I guess I was surprised results were available same day as culture? Oh well, he is getting better on augmentin.
  3. J

    False negative sputum culture?

    Also, he has cultured h flu and staph aureus in the past. I'm thinking the antibx interfered or he had a bad viral infection. Seems odd that he got better after a few days of increased augmentin (from 2 to 3 times daily) plus nebulizer treatments.
  4. J

    False negative sputum culture?

    How often are sputum cultures false negative? My son is currently recovering from a month of sickness including sinusitis that then settled into his chest. His sputum culture was taken 3 days after he finished 10 days of amox and had just started 3 days of augmentin. His sputum was thick yellow...
  5. J

    CF Limbo-Update on immunodeficiency

    Thanks!! Plus he is currently sick again w bronchitis. Saw cf dr yesterday and he prolonged his antibiotics for a month, gave us pulmicort and I was taught chest pt. fast forward 24 hours and he's worse now spiking a 102.6 fever which I suspect is really 103 bc he can't keep his mouth closed due...
  6. J

    CF Limbo-Update on immunodeficiency

    Thank you jshet. He is only being monitored but not doing anything proactive. For example, called the CF clinic I'm trying to make a sick visit today for possible pneumonia for my son and he is not on the priority list to be seen bc he doesn't have a formal diagnosis... Thanks for your thoughts.
  7. J

    CF Limbo-Update on immunodeficiency

    Bump-please read Bump-please read
  8. J

    CF Limbo-Update on immunodeficiency

    My 11 year old son has been in limbo for 5 years now. I've posted here before but I have new information. Stomach pain started at age 7. Chronic sinusitis and bronchitis. Cultured stap and h flu so far. PI diagnosed at age 8 via pancreatic stim test. Enzymes treated for 8 months with...
  9. J

    Ok, I have Cystic fibrosis

    Hi Meech. Sending positive thoughts your way. Hopefully answers will send you on a path to better health. Im interested to learn your mutations as my son is in the grey zone with negative sweats but variations poly 5t 12TG, 7t 11TG and 2 copies of m470v.
  10. J

    Heat Rash? (variant, mild CF)

    What mutation was identified?
  11. J

    What is the best CF genetic test?

    Would suggest the CF lung pulmonologist orders the genetics aa this should be a priority as well as stabilizing and treating his current lung problems. Stay strong!
  12. J

    What is the best CF genetic test?

    Sanfloraine, I think others would sugfest a certified CF clinic. I think it is impotant to ensure the right genetics are ordered. Full genetic screen mutation (2500+ mutations including poly T variants) plus a deletions and duplicatiins test (considered separate). You might want to ask for...
  13. J

    Daughter Genetic Test Results - Please read and send feedback

    There is a really good explanation on the thread called "welcome Ambry genetics." Go to the last page and read LittleLab's comment and the last one by read the last 2 posts. My son has the poly 5t 12TG / 7t 11TG and 2 copies if M470v. No diagnosis but he is followed by a CF clinic...
  14. J

    Genetically Confirmed after 2 years

    My son too has poly 5t/12TG and 7t/11TG and 2 copies of M470v. His genetics with deletions and duplications wwre done a little over 2 years ago as well. Thanks for sharing.
  15. J


    Littlelab, you always bring great insight. Thank you. I agree with your statements around pain control. My son spent 3 weeks in the hospital. Nubain was barely taking the edge off his pain. Of course there are concerns over slowing the gut with narcotics but to see a 9 year old in that kind...
  16. J


    my son has poly 5t/7t and m470v x 2 copies. He had acute pancreatitis at age 9, it was horrible. he is not dx with CF, just atypical CF or symptomatic CF carrier. What CF center are you at? Agree with previous post about looking at enzyme dosage as well as food triggers. For my son, high fat...
  17. J

    Looking for a little advice on what my son could have? Negative sweat test.

    I agree with all comments. Strongly suggest full DA sequencing with deletions and duplications. Make sure full sequencing for 2000+ known mutations. Consider PCD...primary ciliary disk inescapable but seems unlikely bc of digestive issues. Ever considered pancreatic stimulation test done via...
  18. J

    New to the Forum daughter with CF

    My son has 2 copies of m470v and 5t 12TG/7T 11TG. He is almost 10 but not dx. First dx at 9 with pancreatic insuff...suffered acute pancreatitis and partial bowel obstruction and numerous sinus, lung infections. This isca great forum. I'm sorry for your struggle but know there are great people...
  19. J

    HELP please! CF clinic wants to change dx to CRMS

    Hi, my son in in limbo but not with same mutations. I've heard others go to a genetics dr to confirm diagnosis and therefore move on with best plan. Wondering what thoughts are here on this idea? I've heard Johns Hopkins has a good one. We go to Boston Children's but we've not seen a genetics dr...
  20. J

    8 months old and no answers

    Do you know what the other mutated gene is? Are you going to an accredited CF center? You have to be your child's advocate. Stay strong and know that there are many people with CF who lead normal lives. This is a great forum for support. You did not mention if your child has symptoms?