borderline cf - Cystic Fibrosis Message Board

catbnr · 05-16-2002, 03:39 PM

My 9 year old son has had 2 sweat test in 2 weeks both came back borderline for cf. His Dr. has set up DNA testing to start on monday, only 4 days from now but seems like a life time away. The Dr. says that there is still hope that my son does not have cf, he says that 1%-2% of all kids tested just have high sweat chloride levels, and if he does have it he has a mild case, is there such a thing as a mild case? The only symptoms we have seen so far is failure to gain or keep weight on we have been fighting the same 5 pounds for 4 months now, he gains a little but never keeps it on also has not gotten any taller and he has allergy problems year round but mostly in the spring time. I don't want him to have cf but at the same time we need to know what is going on so that we can treat him, he is very skinny and pale. He plays hard and has alot of energy in short burst but when he finally goes down for the night he goes down hard. Sorry this is so long, guess I needed to talk more than I realized. If any one has any ideas or suggestions please e-mail

Kaecee · 05-26-2002, 09:53 PM

catbnr,

Hi there, I have a girl that will be 8 in Oct and her Cf test keeps coming back neg. She has had a total of three of them and everytime I take her back to the G.I Dr. or the Endo. Dr. they keep asking me if she has ever been tested for CF. My girl is alos very small she is 32lbs and 42 inches tall. We fight with her to gain weight once we get her to gain a half pound to a pound she loses it. Michelle is alos very active and when she goes down for the night she is out with in 2-5 mins. Michelle was also allergic to milk and soy produces but have now out grew that.

Karen

catbnr · 05-27-2002, 01:10 AM

Karen,
Hi, thank you for your reply, We went to the Dr. on monday (the 20th) they are finally treating Josh for his allergies, he is on Allegra and flonase but still coughing alot and has the sniffles all the time. The Dr. also drew blood for the DNA testing, we go back on June 6th for the results. The good news is that he gained 6 ounces in the last 6 weeks, now if we can just keep it on him. Has your daughter had the DNA tests done? My sons Dr. says it is possible for a child with cf to have a normal sweat chloride level although it is rare. Is she on any kind of medication to help her gain weight? Josh is not, they say the want to get the DNA results back first and see what that shows. They have already tested him for everything under the sun, cf was at the bottom of the list and the only test that showed anything so I am pretty sure what the dna test will say. Good luck to you and your daughter, I know what you are going through, the waiting and testing and more testing is killing us.

[This message has been edited by catbnr (edited 05-27-2002).]

Kaecee · 05-27-2002, 07:57 AM

catbnr.
yes, Michelle has had DNA testing done. She has had also ever test under the sun. We go back June 10th to the G.I Dr and also the Endo. I am going to see what my Dr. says about CF tests and being neg. and see if he says it is rare..Michelle has had a test to perdict her height and it was 4'9. So if Michelle hasn't grown any in the last 4 months me are going to start growth hormone treatments. She also has had the tests done for that. Her levels for that was on the normal range but very very low. You are right the waiting and tests are killing us too. It's never ending. Good luck to u and your family as well...

Karen

06-12-2002, 07:05 AM

catbrn-
I have a question....I also live in tulsa and am having a hard time getting doctors to take my daughter who is 16 mons seriously, she has many respiratory problems and has been hospilized at least 6 times. what doctor are you seeing?