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Regular Member

Date Joined Apr 2006
Total Posts : 25
   Posted 4/4/2006 4:16 PM (GMT -6)   
Hi! I am new to this board. I have been reading for awhile and finally decided to join. I have three sons and one daughter. My last son was diagnosed with cf at about two weeks old and he is now 2 years old. My other three children do not have cf. They all have the same father. We had no idea we were carriers and no history of cf on either side of the family. It was a shock when we found out. I guess I just needed some other parents of cf children to talk to. Noone else really understands what we go through...especially the emotional part. My son is doing well and has his annual cf appointment on Friday. I always seem to get so stressed out the week of his appt. I just want them to say he is doing great!! He is a very active little boy who just loves life. I would love to talk to other parents out there.....thanks!

New Member

Date Joined Mar 2006
Total Posts : 19
   Posted 4/4/2006 10:09 PM (GMT -6)   
Hi Carrie my name is Heather and my son will be 8 weeks old on Friday the Dr's called me when he was 8 days old and told me they believed he had CF.We had no idea we were carriers either.My husband and I also have a daughter, 4 years old who we just found out doesn't have CF but is a carrier.I also have a son from a previous relationship he is 13,we have to find out if he is a carrier.I'm so glad to hear your little boy is doing wonderful and I hope his app. on Friday goes well.How much does your boy weigh and how many enzymes does he have to take? When you started the chest PT did you notice any mucus right away,we just started with the chest PT and he seems to cough more but there isn't any mucus.Are any of your other children carriers?

Regular Member

Date Joined Apr 2006
Total Posts : 25
   Posted 4/4/2006 11:21 PM (GMT -6)   
Heather..Thanks so much for replying. I think it will do me good to talk about all of this with people who understand exactly what its all about. My son weighs approx. 25-26 pounds. I will know for sure on Friday. I have a digital scale at my house that I weigh him on sometimes. I like to keep up with his weight gain just to make sure he is still gaining. He turned 2 in December and I think his weight is doing pretty good....especially considering the fact that he has a bad milk allergy. The milk allergy makes the gaining weight even that much more difficult. He is still on formula (Elecare). He is in about the 20th percentile for height. He takes 2 enzymes before meals and one before snacks. I did not notice mucus when he was an infant. He was born with a bowel obstruction. He had to have surgery at 1 day old and they routed both of his intestines to the outside. He had a colostomy bag until he was 5 weeks old at which time he had another surgery to put intestines back together. His intestines had actually ruptured while I was still pregnant with him. He finally was able to come home for the first time from the hospital when he was 9 weeks old. So considering all his little belly has been through he amazingly has no stomach problems now. While he was in the hospital they started doing his chest pt (around 2 weeks old). I really never noticed any mucus. He has never tested positive for psuedomonas (sp?). I do notice it more now that he is a little older...sometimes he coughs alot and other times not at all. He caught bronchitus about a month ago from my daughter and he did very will getting over it. The doctors really wanted to put him in the hospital but I asked if we could just try an oral antibiotic and promised I would do more aggresive treatments and thankfully it worked. My other children have not had blood test to see if they are carriers..just sweat test. I am very curious though to know if they are carriers....and I will have them tested for their own future knowledge. What led the doctors to believe your baby had cf?

Regular Member

Date Joined Sep 2005
Total Posts : 318
   Posted 4/5/2006 5:38 AM (GMT -6)   
Welcome Carrie!

It's good to have you aboard. I am a mom of twins with CF. My daughter who is a carrier of CF (same genetic mutation) is not affected by CF.

Kathy, mom to identical twin boys with CF (10 yrs), daughter 21, grandaughter 3, Newborn grandson
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.

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