Recent content by Julie7

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.

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

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.

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...

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...

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.

Bump-please read Bump-please read

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...

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.

What mutation was identified?

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!

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...

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 Ambry...so 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...

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.

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...