Hi AllMy first time on the site. I am Cassie, mother of Matthew 2yrs w/cf and Joshua 7months wo/cf. We are from Australia. It would be interesting to hear how you are advised to care for your children with cf in regards to the environmental factors - ie smokers, sick people, child care etc. Also treatments I read earlier - liquid enzimes - I have never heard of.Matthew has been really great - 1 hospital stay 16 days (no infection etc found) his main issues are his digestion. He has double DF508. Josh is a carrier.It seems common by reading the posts that people have two different genes - we have been led to believe it is fairly rare.Good health to you all.Cassie G. from oz
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New from Oz. After experiences from other side of world
- Thread starter anonymous
- Start date
Welcome Cassie,My 2 yr old daughter Mylee has a double copy of the delta F508. Her main problems seem to be sinus related and digestive...she is a small little monkey. <img src="i/expressions/face-icon-small-smile.gif" border="0">We are often advised to keep her away from smoke...which isn't a problem since our families don't smoke. We try very hard to keep her away from sick people...and I have to stay on the ball, because sick people really don't try to stay away from her. Frequent hand washing is a must (for all of us, her included).So far so good. Her twin brother (wocf) actually has been sicker than she has. I hate it for him, but am so thankful for her, if that makes any sense.Just wanted to say hi and welcome you.ChristieMommy to twins Malachi wocf and Mylee wcf
AbsintheSorrow
New member
Then I guess I must be special! Haha. I have a Delta F508 from my mom, and a rare mutant gene from my dad. It might have a name by now, but when we had genetic testing in 1989, they didn't know a name for the gene my dad gave me.
Hi, My daughter will be 4 this summer and has double deltaF508 as well. Her problems are mostly digestive but in the past has had a lot of sinus, ear & reflux issues. Thankfully this past Fall she seemed to outgrow them and we are taking her off those meds. I think the probotics were a factor as well.Frequent hand washing is essential. We also watch her around sick people and leave her home if necessary, although we don't overdo it.She was diagnosed at 8 weeks and has not been hospitalized since. When she gets a cold the cough can get pretty bad but when there is no cold she is still cough free. We know this is progressive so we are taking advantage of the good times and hopefully they will find a control for the disease which will allow her to lead a long and healthy life.