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Julie, my son has 5T 12 TG but not the Delta F508. He's in diagnosis limbo, 9 years old. You can see my older threads to read whole story. Stay strong and congratulations on your new baby!

Does anyone know if you can test for CF using past biopsies from a previous colonoscopy? Or would you have to have a new colonoscopy to gather additional samples? Previous colonoscopies have prob 6-8 samples but maybe one 2 came from the rectum.

How did you get a diagnosis? Glad to hear you have preventative treatments, that's awesome. Yes, I have read the same, that identical twins could have exact same mutations and live different lives, in terms of both quality and length. I think science is only at the beginning of understanding CF...

Ok, well you started jump so I cannot resist replying. I've posted a few times about my 9 year old. He has 2 copies of m470v plus 12TG 5T/11TG 7T and has chronic health issues, both GI (mostly) and lung (mostly sinusitis, bronchitis and pneumonia). He is not dx but followed by CF clinic pulm. We...

This must be a difficult time for you, especially getting partial information on a weekend. Keep doing what you are doing, breastfeeding is giving him immunities and it sounds like he is doing well. Like Printer said, the results you received were likely a standard panel, depending upon where...

Ditto Bill's comment

I don't think the last post is correct. I think you have to request deletions and duplications as a separate test. There are multiple companies who can do this and some claim more mutations can be found via their lab. You could ask and request additional tests be added, they already have the...

Shellee, my son has 2 copies of m470 too but have been told it is meaningless?? He has 5t/7t 12tg and mostly GI issues and sinus issues. He is being followed by Boston Children's but not on any treatments right now.

My 8 year old had acute pancreatitis which resolved in about 3 weeks with bowel rest, hydration and pain management. It is really painful so stsy on top of pain levels. My son also had a partial small bowel obstruction and we are not sure which came first. Wish a speedy recovery!!

Doctor ever suggest 3 day fecal fat collection? Basically collect stool for 3 days and keep food diary so they measure what goes in and out. What about measuring your fat soluble vitamins in your blood, another indicator of malabsorption. More invasive option, something called pancreatic...

Jeez, if you lived near me I would offer to help...make a dinner, watch kids etc. I believe in karma. I have an awesome ziti recipe I make neighbors during hard times, even if I don't know them well. Maybe have a friend organize short term support? When one of my mom friend's son required...

Welswitch, wondering if you mean sudafed or Benadryl? Sudafed is not an antihistamine, has nothing to do with histamine. It is a decongestant. Sometimes you will find both decongestant and an antihistamine in cough/cold products. Agree with OP and check with your doctor. If you continue taking...

Agree w previous post, get an X-ray to be sure. My son was having diarrhea and had a partial small bowel obstruction and also acute pancreatitis. Is he PI? He lost interest in eating or drinking much bc of belly pain which contributed to the problem. Now we have a rule. He has to drink 2-3...

Your story sounds like mine, except we do have CF centers here. They look for genetic physical abnormalities of the pancreas, clogged ducts, masses (ie malignancies) and general overall appearance. What about milk intolerance? Have you tried eliminating milk products? My son also had upper...

I see, yes, those fecal elastase numbers are well below 200 plus vitamin deficiency, thats what i was wondering. I would ask how many mutations for CF were tested, and for the report. Our doctor told me the first CF panel was "normal" and when i requested the record result, there was a notation...

How low are the fecal elastase numbers? Were there any further pancreatic function tests done? Fecal fat, what about fat soluble vitamin levels (blood)? Are your children suffering from failure to thrive or what prompted the investigation to look at Pancreas issues? SDS would be even more rare...

It depends on what the dr ordered: 1. Spot test requires just one poop 2. 3 day poop test requires daily diary of food (recommend 100g fat/day) Both tests measures amount of fat in stool but #2 is more accurate because you will record EXACTLY what your child ate and collect all poop (befire it...

I stopped at a wine store a few weeks ago and told the store owner that I like old vine Zinfandels but that they give me headaches from one glass. He said it was the sulfites and they sell this liquid to get rid of the sulfite preservative after you open it. Not sure about pouring some liquid...

I sent you a PM of someone at Nagoya University in the MHLW research profram gor CF, worth a try.

Glad to hear, hope he is better very soon!