I am new to the boards and excited to find a place where I can ask a few questions. My Ped. Gastro. office is incredibly busy and they don't care to divuldge too much info yet.
On the 27th of March my son (who is 5) had a scope of his esophagus and also a sweat test for CF along with drawing blood to test for celiac disease. Jeremiah (my son) has not gained weight in two years. He weighs 38 pounds, has a chronic cough and is extremely picky about what he eats. He also has chronic GERD. We received his sweat test results last Tuesday. His level was 61 and we had to go in for a repeat test this past Saturday. I am waiting...not so patiently for the results of the second test. From what I have read a result of 60 or greater is positive for CF.
At this point do I just need to accept the fact that we are looking at a CF diagnosis or is there still hope that it may not be CF?
Last edited by Trishastribe; 04-03-2006 at 11:14 AM.
From what I understand -- a sweat test can show NORMAL results, yet the person can still have CF. I don't believe the sweat test has ever shown a false positive -- meaning if it shows CF, it usually means CF.
DS had a normal (32) sweat test; however, his blood test showed double delta f508.
If your son does in fact have CF, they'll most likely prescribe digestive enzymes to help your son digest his food -- not malabsorb and he'll be able to gain weight. They may prescribe an acid reducer in case he does have refluxe. And probably chest physiotherapy (CPT) and nebulized medications.
Don't believe all that you read about CF -- there's a LOT of old/outdated information. Lots of new medications, treatment options. Life expectancy has increased substantially in the past few years, too.
If it is in fact CF, you'll want to see if you can get a referral to an accredited CF facility in your area. The cystic fibrosis foundation has a listing of those facilities, as well as some of the most up to date info on cystic fibrois -- treatment options, medications, nutritional info...
DS goes to a local nonaccredited clinic and an accredited facility in a major city about 3 1/2 hours away. We go 2-4 times a year. The local clinic just isn't as progressive, proactive as the one in the city and we want the most aggressive means of treating DS's CF, to keep him as healthy as possible.
I don't have much to add about the sweat test as my son never had one. He was diagnosed with a genetic blood test. But try not to stress too much. If your son does have CF he will get proper treatment and will start doing much better.
I have a son w/ cf whose 3.5 yrs old-- I completely agree that you will need to find an accredited CF center. Ask your doctor when you see him on Monday, they are really the key players you will need to talk to about this, no matter how far away they might be. Are you able to find the website??
I would recommend a genetic blood test as well.
The one thing to remember , if this does turn out to be CF is that your son is the same person- the day before, or the day after a positive result. The issues and struggles you've had don't change, but there is a REASON for them now. A diagnosis can get you on the right path so you can manage your son's care as opposed to doing it piece by piece- no weight gain, cough, reflux, etc.
I wish you lots of luck- these boards are a great resource.
Thank you all so much!! I am finding that I don't know how to manage my emotions very well right now. I'm just trying to act normally and get through the day but then I find myself yelling at DH for everything and nothing.
I don't want Jeremiah to know how stressed I am. We also have three other small children to care for.
You are so right. At least once we have a diagnosis we will be dealing with the whole picture and have some answers.
I looked around to see if I could find a CF center near us. We live about an hour south of Pittsburgh, PA and it seems that Children's Hospital would probably be our best resource.
I am finding my way one step at a time.
Last edited by Trishastribe; 04-03-2006 at 06:00 PM.
I know it's hard not to be overwhelmed. There are a ton of emotions to deal with. As the other poster said, it doesn't change who your son is. He will still be the same little boy that you have always known and loved. Life is much better than I ever imagined it would be the day we found out that our son might have CF. Please keep us posted!