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If you go to www.cfww.org/links You will find a Japan CF network. There is a contact name, number and email which might be helpful though I know nothing of its value.

Xarismata-san, I have some colleagues/friends in Japan and will try and see if they have anything helpful to add, especially regarding clinics, etc. have you looked into Tokyo, whether any clinics there? Realize that would be a decent train ride but doable.

Good call, that's what they are there for, never worry or feel bad about paging dr. Keep us posted. Sending positive thoughts your way.

I'm sorry you are in this situation but as a mom, I can tell by your tone how concerned you are. If you need one more nudge, make the drive to the ER, preferably CF center. Moms always know, don't second your gut instinct.

I'm in the same boat. Pancreatic stim showed PI (mild to moderate) in March 2012. All elastases since then were always over 500. Second opinion dr said by fecal elastase my son is pancreatic sufficient. Fast forward to two weeks ago and recent elastase were 347 and 400. Why is there such s...

My pediatrician said while h flu is common to everyone, kids are immunized against it in US. Pulm also said h flu is most common cause of sinusitis, ear infx, etc. the two comments don't really make sense together but think CFers get h flu more commonly maybe cause they r more immunocompromised...

What about acute pancreatitis as a possibility? My son was just hospitalized for this and while vomiting is common, not always present. Is he in pain?? Would get an X-ray to see if anything suspicious for bowel obstruction (partial or otherwise). Bloodwork could look at his blood amylase/lipase...

Ask for the report just to be certain. It should say staph and something else like "few" or "moderate", etc. my son tested positive for few staph and was not treated. He's in limbo rt now, no CF diagnosis but just thought I'd share what the CF pulm said. Along the lines of others, since it was...

My son, almost 9, says this alot bc of his digestive issues. I agree w earlier post that I remind him that everyone has to deal with something and that it could be worse. I try to teach him about different disabilities and give him the strength to work through it. It's ok to be upset, to vent...

3 fecal elastase results from last week: 357, 400 and 500. Previous tests since March were always >500. Dr said all 3 results are considered normal. As my better half says, wait for genetics. Thank goodness my husband has more patience than me.

Yes, dull pain w every meal (low fat diet lactose free) and soft (not diarrhea) stools.

Survey says? Is there a dr #3? (family feud reference FYI). Yes, I try to laugh now and then...

IVS8 5T-TG12-M470V/5T-TG12-M470V Problem is my son is in diagnostic limbo, with above results so far. Full Ambry pending...so our CF center does not consider him CF...

I'm confused. Many of you have read my posts and provided great support. In March, dr #1 diagnosed my son with PI based on pancreatic stimulation (secretin) test during endoscopy. Four out of five digestive enzymes were below normal. Dr#1 said this represented "mild-moderate PI." He prescribed...

Cftrsplicing Are you talking about 5T 12TG polymorphisms alone OR paired with another CF causing mutation?

Discharged today after almost 3 wks in the hospital. Final dx include gastroenteritis, acute pancreatitis and ileus. Questionable whether gastroenteritis was ever present but it's hard to say, viral if anything. Ambry pending, due w/in two weeks and additional pancreatic genetics ordered outside...

Update...my son was admitted Tuesday am for extreme belly pain. Lots of details, too much to say, but please send any positive vibes his way right now. He got an NG tube yesterday, we know there is inflam in his rt colon near or at ileum. Not sure if this is related to PI or separate (like IBD)...

Well, my 8 year old also just cultured few staph in his sputum culture. Three months before that, he cultured h flu which he was treated for with antibiotics. The dr did not want to treat staph, said it was normal flora. But my son hasn't been diagnosed with CF, sort in limbo, waiting for more...

Ok, new update, got the plan. New bloodwork for PCD, amplified CF and SDS. New endoscopy with bronchoscopy to be scheduled in August. No NPD bc dr doesn't feel it is warranted and apparently it is quite a difficult test (uncomfortable) for children to complete. Dr doesn't think he fits criteria...

8 July UPDATE from APPT: 8 yo with pancreatic insufficiency, fighting for genetic sequencing Well, just thought I'd post an update although there is not a whole lot to say. We are still waiting for the second opinion plan of action, which will hopefully include amplified DNA testing for CF, SDS...