My daughter has been hospitalized with pancreatitis on 2 occasions. Docs detect an abnormaility in her pancreas. She's scheduled for cystic fibrosis testing and an MRCP this week. What is the latest anyone has heard for a diagnosis. Isn't 9 years old very rare? Her symtoms: Elevated amylase and lipase, fatigue, vomiting, weight loss, abdominal pain, pain is now radiating to back. She has no breathing difficulty yet. She has not grown since Nov 2003. She actually has lost several lbs since then. In hind-sight....she's probably been sick for a while, but it's been undetected. Anyone out there have the same story?
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
AGE OF DISCOVERY
- Thread starter anonymous
- Start date
9 yrs old isnt rare at all there are ppl who were diagnosed over 40 with cystic fibrosis... the symptoms dont sound totally like cf.. wish you loads of luck that you dont have to join our family.. but if you daughter does infact have cf there is alot of medical advances, and were always here if you need to talk/vent....
good luck
good luck
I have heard of many children getting a late diagnosis. This is common where there is no new born testing or where the child has one CF gene that can be found. Some centers dont test for all the genes. Make sure you find one that has the highest testing level and looks for the most genes eg 1000 plus mutations.
I have heard of people not having the common symptoms of CF eg pancrese problems like your daughter and that may be all and yet still have CF. IT is such an individual disease and varys so much. I recently heard of a lady in her 40s who had similar problems all her life and was told that she did not have CF yet about 5 months ago she was diagnosied as CF yet they can only find ONE GENE!!! Now that is weird
Good luck with your findings.
Monique O'Neill
I have heard of people not having the common symptoms of CF eg pancrese problems like your daughter and that may be all and yet still have CF. IT is such an individual disease and varys so much. I recently heard of a lady in her 40s who had similar problems all her life and was told that she did not have CF yet about 5 months ago she was diagnosied as CF yet they can only find ONE GENE!!! Now that is weird
Good luck with your findings.
Monique O'Neill
My son has CF, but I don't. I do have crohns disease and have experienced the same symptoms as your daughter. Have they tested for crohn's? I have had two MRCPs and been hospitalized for pancreatitis many times. My amylase and lipase are always up and down and it's very painful. I was put on enzymes to give my pancreas a rest, it worked wonders!! The MRCP should answer a lot of questions and a sweat test will also. good luck
My son was diagnosed with cf in his early thirties when he went for fertility tests. Looking back now I can see classic symptoms of cf but they were mild and doctors told me it was allergies. As difficult as it is to hear this in early childhood it is a tremendous shock in later life. I wonder if he should have had some treatment over the years but it is impossible and distressing to play with these thoughts.
Hi,
My story is not a common one. I was diagnosed with CF at the age of 35; two positive sweat tests and genetic testing with Delta F508 being the end result. Prior to 35, I never experienced any major symptoms; occasional antibiotics to treat bronchitis, but nothing more. It was only at age 35 that I became gravely ill and thereabout came endless testing until it was discovered that I had CF. I am now 36 years old and require daily doses of Zithromax and Tobramycine to combat Pseudomonas. My FEV1 is presently at 75%.
The ironic part about this disease is that it is present from the day you are born. The severity and symptions depending on the type you have.
In conclusion, I hope the very best for your daughter. But the answer to your question, is yes, the disease can be diagnosed at any age.
Anonymous
My story is not a common one. I was diagnosed with CF at the age of 35; two positive sweat tests and genetic testing with Delta F508 being the end result. Prior to 35, I never experienced any major symptoms; occasional antibiotics to treat bronchitis, but nothing more. It was only at age 35 that I became gravely ill and thereabout came endless testing until it was discovered that I had CF. I am now 36 years old and require daily doses of Zithromax and Tobramycine to combat Pseudomonas. My FEV1 is presently at 75%.
The ironic part about this disease is that it is present from the day you are born. The severity and symptions depending on the type you have.
In conclusion, I hope the very best for your daughter. But the answer to your question, is yes, the disease can be diagnosed at any age.
Anonymous
NoDayButToday
New member
Slightly irrelevent, but technically zithromax is not used as an antibiotic for pseudomonas. In CF, it is used for its anti-inflammatory qualities. That's also why we take it constantly, and not for only weeks at a time
Hi Coll,
Thank you for clearing up my misunderstanding with respect to Zithromax's qualities. My intention was simply to share my story with everyone and to provide some insight with respect to what age anyone may be diagnosed with CF. After all, it has only been 6 months since my diagnosis. I may not be as up to date on treatments as others may be, but I am learning everyday.
Anonymous
Thank you for clearing up my misunderstanding with respect to Zithromax's qualities. My intention was simply to share my story with everyone and to provide some insight with respect to what age anyone may be diagnosed with CF. After all, it has only been 6 months since my diagnosis. I may not be as up to date on treatments as others may be, but I am learning everyday.
Anonymous
NoDayButToday
New member
No problem. <img src="i/expressions/face-icon-small-smile.gif" border="0">