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Nicki Injune
New Member

Date Joined Aug 2007
Total Posts : 1
   Posted 8/14/2007 10:12 PM (GMT -7)   
just a short note to say hi to all. My son was diagnosed with CF at 4 weeks of age through the heel prick test he is now 18months old.
We havn't had any problems with him as yet and wouldn't have thought he had anything wrong with him if we hadn't have gotten the test done.  The only strange thing we noticed about him was that he had salty skin.
We have no local doctor where we live so have to travel 8 hrs one way for our CF clinics so we are very happy that our son has stayed well. :-)
bye for now

Forum Moderator

Date Joined Feb 2007
Total Posts : 1050
   Posted 8/15/2007 2:08 AM (GMT -7)   
Hi there!
Welcome too healingwell!!

Wow, 8 hours journey! I thought it was bad enough at 2 hours.

I'm happy your son has been diagnosed so early. This means hopefully he wil get the right treatment straight away. Which will help him to lead a better, fuller and much more normal life!

Hope everything stays good, keep us posted!
Co-moderator in the: Cystic Fibrosis Forums
 Woe to the child which when kissed on the forehead tastes salty. She is bewitched and soon must die.
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Tobi nebuliser, Serevent, Salbutamol, Sertraline, Odansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Omeprazole.
Had a Port-a-cath fitted on chest wall since 11th Nov 05

New Member

Date Joined Aug 2007
Total Posts : 2
   Posted 8/15/2007 6:14 AM (GMT -7)   
hello i'm new to this site i googled it to see if there was a chat site for CF. My little boy was also diagnosed as a baby at 6 weeks through the heal prick test, he is now 21 months nearly 2! we travel every 6 months which is 7 hour drive and the doctors travel here every 6 months so his seen every 3 months.  His doing great he hasnt had any problems with his lungs which i pray he never does and does not cough so hopefully his lungs arnt affected, he takes enzymes in apple sauce and i give him pentavite (vitamines for children), and also give him fish oil,olive leaf extract and gojji juice daily which are all natural ingrediants i think this is important to keep his immune system up!. he has daily physio of 15 minutes and i try to keep him running around and active. We are very opptimistic there will be a cure, one of our Dr. said his gene only needs 3 % of the cure to work, this Dr. also gives us hope as he thinks there will diffinatley be a cure one day hopefully when  my boy is young i pray! he is a very happy gorgeous baby.
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