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Why is it that dr say her variants have nothing to do with CF, does she have other CF mutations as well?My son has homozygous m470v and poly 5T variant which dr are focusing on the 5t right now while we search for other mutations. I'm curious why they say those mutations are meaningless. When...

We are still here everyone, waiting and still waiting. While we wait for the plan my son has missed one or two doses of his enzymes. Every instance he complained of stomach pain except once when he ate a burger and pretzels. Otherwise I think his dose of zenpep 15 is too low. His dose is...

Wow, this is unbelievable and scary that they won't test given siblings. What about some basic stool tests through a GI doctor, given complaints of tummy ache and diarrhea?? Perhaps there are some malabsorption issues that would help justify genetic testing, though I think you already have...

I have read about the points rewards program for Zenpep, etc. I have signed up, but still waiting on my first free samples. Besides that, what is the best, most reliable online shop for SourceCF vitamins and Scandishakes. I have googled it but lots comes up at varying prices and just wondered...

I sent you a private message.

8 yo with pancreatic insufficiency, fighting for genetic sequencing I guess being so tired I am also being harsh. The pulm dr could talk circles around the smartest, that was clear. He was thorough and now I wait for their suggested plan. Made it back to Philly, back to work tomorrow!

8 yo with pancreatic insufficiency, fighting for genetic sequencing Update Had second opinion at Boston today, not much to say. Pulmo said he would speak to GI and present us with a plan. Bc of the 5t variant, they expressed interest in doing some more DNA sequencing from Ambry as well as other...

Wonder if curry paste is gluten free? That looks so good! Will have to check that out, if I can make that gluten free!

Have you talked to your doctors about some of the benefits about being Dx'd w/ CF, ie maybe more insurance coverage on items for prophylaxis? I am confused. I feel like I have read similar less mild stories and those patients are Dx'd w/ CF. even w/o finding any mutations, I've read of dx'ing...

8 yo with pancreatic insufficiency, fighting for genetic sequencing Good point Misty, no one has mentioned that yet. It's on my list for Boston next week! His nose is stuffy year round.

8 yo with pancreatic insufficiency, fighting for genetic sequencing Sanfloraine, I am flying my son to Boston next week for a second opinion. His current GI who works at an accredited CF hospital never heard of the 5T poly and went on to say there are over 100 CF mutations. Yes, that's right...

Kapsy, I am sorry your son has been sick but I'm glad you found this forum. I can tell you I am so happy to have found people to talk to, you can read about my situation with my son on the same page you posted. While my 8 year old son does not have a formal diagnosis of CF (yet), his health...

Hi Steve, Was hoping you could help me with this interpretation from Quest, which said negative. Under the newly diagnosed group, I've described my son's symptoms including PI, below growth charts and sinus issues. In terms of the testings, should we ask for additional, I.e. Deletions? Quest...

8 yo with pancreatic insufficiency, fighting for genetic sequencing Ok, I think an easier way to phrase his mutations is IVS8 5T-TG12-M470V/5T-TG12-M470V Bear with me, I'm still learning.

Sorry if I confused you w my post. My apologies.

Sorry if I confused you w my post. My apologies.

8 yo with pancreatic insufficiency, fighting for genetic sequencing Update with CF results heterozygous for 5T polymorphism in intron 9, adjacent to 12 TG repeats 2 copies of p.met470Val (formerly (M470V) Pulmonologist says this is negative for CF Done by Quest with a disclaimer that this assay...

Azithromycin is an antibiotic, not an anti inflammatory medication. The brand name is Zithromax or Z pack (5 day treatment). It is a macrolide antibiotic used to treat infections such as (but not limited to) bronchitis or pneumonia. Hope that is helpful.

Azithromycin is an antibiotic, not an anti inflammatory medication. The brand name is Zithromax or Z pack (5 day treatment). It is a macrolide antibiotic used to treat infections such as (but not limited to) bronchitis or pneumonia. Hope that is helpful.

If you think he will require that surgery, it makes to get established there in Boston where you say they have expertise in this surgery.