This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!
OK, remember that I'm not a Doctor, just passing along life information.
Delta F 508 tends toward digestive problems. It sounds like they are doing everything right. Ask one of the Doctors to do a belly x-ray to see how much stool is there. Perhaps a change in enzyme brand will help and...
Do you see a CF SPECIALIST at a ACCREDITED CF CENTER or do you JUST go to a CF Center? Does he take enzymes? Is he on Toby, Pulmyzime or Sailine? Does he vest?
Beccamom:
My Doctors and I believe that my dad had CF. He fathered 4 children so his case would be "mild". He was, however. hospitalized on 3 occasions for TB (we believe to be a mis-dx). We therefore believe that the V562I, T5, mutation came from him and the Delta F508 from my Mom. The...
Basic test is usually 30 mutations. When I was first tested in the late 90's, I tested positive for Delta F508. My second test was done in 2011 (a full cf sequencing) where the found the second mutation. Even if the sweat test is negative, push for the Full Sequencing.
Bill
Sanfloraine and Aboveallislove:
Both of you are showing sufficent symptoms to justify further examination. Trust me, as ADULTS we do not so the same symptoms as children. Your dx therefore will be different.
If it is required by your insurance, get a referal from your PCP and go to an...
Two things. before I increased my Creon (under a Doctors direction) I would get a pain every afternoon about 4:00 pm. The increase in Creon cured it. The second issue is a mucus caused problem. The mucus that you swallow, adheres to the walls of the colon, forming "gluey walls". The stool...
About eight months ago, in the Lawrence Massachusetts Superior Court (Commonwealth of Massachusetts) a Mother was convicted of second degree murder for withholding her childs cancer meds. She is presently doing 20 years. Obviously the child died and the Mothers defence was that the meds made...
Ginger:
The real issue here is a lack of communication between you and the CF Doctor. It is not your place to make such a medical determination without being completly informed. As in informed consent. It is your responsibility to communicate to the CF Team any questions that you may have...
Not all sweat tests are equal. Local hospitals do a "screening sweat test" it is NOT the same as a sweat test administered at a CF CENTER under the direction of a CF SPECIALIST and given by a TRAINED SWEAT TEST TECHNITION.
London is not that far from Toronto. Toronto has one of the best CF...
I am as voyeuristic as the next guy. I like to watch a good fight and see people "wash their dirty laundry" in public. If a situation like this occured when I was in business, I would have brought the principals into my office and discussed it to its conclusion. In private. I would never...
Nicole:
Alot has happened in the CF world in the past 8 years. If you are still in Toronto, I would go back to Sick Kids and see a CF Specialist (not all Doctors at Sick Kids are CF Specialists) and ask them to do a FULL CF SEQUENCING.
While I showed some symptoms as a child, my first episode...
LouLou:
You have been here alot longer than I have been and I bow to your experience and knowledge. I have, whoever, seen threads shut down ( usually by Tom, I'm not a Doctor yet) for almost no reason at all.
Lou, I hope that you don't fault me for making a suggestion.
Bill
Cheryl:
Your comments are perfect. I too support Jon and Frank as they go on with their respective lives and I wish them all possible success in there new ventures.
I never thought that I would ever see the day that I would suggest this but Imogene, it is time to shut down this thread. Then...
This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
By continuing to use this site, you are consenting to our use of cookies.