LOVING MOM

[anonymous]

PLEASE HELP ME WITH THIS I AM NOT SURE THAT I AM DOING THIS CORRECTLY. MY SON HAS JUST RECENTLY BEEN TOLD THAT HE HAS CF. HE IS 26 AND HAS A MALABSORBTION PROBLEM HE WEIGHS 56LBS. HE IS PRESENTLY IN THE HOSPITAL FOR THE LAST 2 WEEKS. FOR YEARS THE DOCTORS COULD NOT TELL US WHAT WAS WRONG. UNTIL FINALLY ONE OF THEM TESTED HIM FOR CF. HIS SISTER DIED IN 1999 AND NOW THEY TELL US THAT SHE MOST LIKELY HAD THE SAME ILLNESS. WHY ARE THE DOCTORS NOT TESTING MORE FOR THIS ILLNESS?
LOVINGMOM

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MY SON WAS RECENTLY TOLD THAT HE HAS CF. I WOULD LIKE TO TALK TO SOMEONE ABOUT THIS.

 

[anonymous]

CF is usually diagnosed in a childs early years. If your son had no problems as a child they would not have tested for it, or they just screwed up. I was not diagnosed until I was 22. I was always under weight my entire life and still am even with taking enzymes and that still never tipped off the doctors. My resipitory problems started when I was about 19-20 I stopped playing hockey and wasn't exercising, I started to develop a cough and would always bring up mucous and my family doctor would give me antibiotics and told me to keep taking my inhaler and sent me on my way. I put up with this for about two years (too long) and I finally had enough and asked to see a specialist and that specialist told me what I had even befor I was tested.

Dave 29 w/cf

 

[kybert]

in australia all babies that are born from now on get compulsory heel prick tests to test for genetic abnormalities. unfortunately, people born prior to around 2000 have to go on symptoms. im not sure what the go is in the US for tests when babies are born. as dave said cf is typically known as a childhood disease and you will get overlooked as an adult with similar symptoms. i guess the only thing people in that situation can do is not give up until they find an answer for why they are feeling ill.

 

[anonymous]

I'm wondering just how much regular MD's know about CF & it's symptoms/signs. And like someone else mentioned, a lot of the doc's just suspect that if someone is in their 20's & have CF that it would have been caught by now by other Dr's. I hope your son is able to gain a whole lot of weight now that they know his diagnosis & can get him some enzymes. Please keep us posted on how he's doing.

 

[anonymous]

Regular family MD's do not know diddly squat about CF and frequently dismiss concerned parent's quesitons and fears about CF. Many parents have come on this board describing their childs illness and asking if it could possibly be CF because their pediatrician dismissed it as a "lactose allergy" "upper respiratory infection" "obstructed bowel"... Everyones advice to them is, trust your maternal/paternal instinct. If something isn't right with your chid, you are going to be the first to know. And although some results have come back negative for parents who visit the board and ask the questions about CF, most of them come back with a CF diagnosis. There is definetly not enough education out there for doctors regarding this disease. The CF foundation (as well as other CF related foundations) are advocating to require All states to test infants at birth. Some states/hospitals don't do it because of course, it costs money. but what they don't realize is that the longer one lives without a correct diagnosis, the more money it will cost the parents/insurance company in the end when it's all said and done.
I have jumped on the bandwagon to advocate for this law, and maybe you would be interested as well. You can start by visiting www.cff.org.
Best of luck to you and your son,

Julie