Cystic Fibrosis

Julianne - posted on 07/27/2009 ( 11 moms have responded )

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Hi. My six year old daughter was diagnosed with Cystic Fibrosis about a year and a half ago.
Anyone else out there with a CF child?

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Jill - posted on 08/12/2009

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Good morning ladies - I have a 16 month old son with CF and he was actually diagnosed in utero! How far they have come!! He just got his monthly culture back yesterday and contracted psedamonas for the second time in 16 months. The first time it stayed as an URI so we irradicated it quickly. We are crossing our fingers that we can do the same again. I just hate the TOBI and Cipro and how it affects my little man. But we will do what we have to. I have taught him to say "kick butt" (may not be appropriate) but he knows that we have to do!! So on top of the ultrase, singulair, prevacid, ADEK, Xopenex, and CPT, we are adding another 40 minutes of the nebulizer for the next 4 weeks. We have been fighting with the insurance company for the last 6 months about the vest (says it isn't covered for children under 2) so we continue the manual CPT. We had been asked to be involved in the hypertonic saline study for infants, but didn't sign up. After reading Christy's post below about the saline, I think we should have! I also agree with Cristy on the blessing of having young children with the wonderful things that are going on with research. I am deeply involved with the CFF and raising money to get this disease cured! We can do it!! We are strong moms with even stronger children!!

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User - posted on 09/07/2013

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My daughter also has cf she is 8 yrs old she takes 4pills every day with meals and snacks too

Kelly - posted on 09/18/2009

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Thank you all for posting your stories. We have an 18 month old daughter with cf. She was diagnosed at 9 months & I think so far we have been very lucky! She takes Creon enzymes, Multivitamin, vitamin E, ranitidine (for acid reflux) and has her nebbie treatment & physio twice per day. In May she was put in the hospital because the had the flu & the doctor felt she needed help pu tting weight on, so she was given a g-tube. What a difference the g-tube has made! she was getting colds every week almost before & I don't think (until this last week) that's she's had one since. She is fed through her g-tube overnight & eats normally during the day & although she is not gaining quickly, she is gaining on her own curve, so we are very happy! She is at 19 lbs now & a very "healthy" happy little girl :D

Gayla - posted on 09/09/2009

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Believe it or not my son was diagnosed 5 months shy from 17! He is now 23 and doing OK. Actually I think you folks that started treatment for this disease at a young age have an easier time than he has. He was brought to eat healthy but nothing that was fatty so he has a struggle learning to eat things that will keep weight on him. Things are difficult and I know we are facing lung transplant some time in the future. And all of this happened because of 3 bouts with pneumonia and here we are. I'm so encouraged to read your posts as it helps me to keep my chin up also. I try not to baby him or treat him special but that is really, really hard. If my son had found out about the CF as a young child I would have treated it like he wore glasses and just absorbed it and went on..................keep up the good work - college is around the corner!

Jill - posted on 08/24/2009

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A HUGE THANK YOU to you Chrissy for supporting the CF community! We couldn't do it without support from loved ones!! You are appreciated!!

Chrissy - posted on 08/23/2009

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I do not have a cf'er, but my best friend has two boys with cf. They are the greatest kids in the world! One is 12 the other 10. I have the wonderful oppertunity to get to share lifes with her and her kids. She learns about my daughters disease and i the cf. I just wanted to tell you ladies to keep up the good fight and stay strong. My friend and I and many many others im sure are doing fundraisers to help find a cure all the time, and it is definately in the near future!!

Jill - posted on 08/17/2009

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THANK YOU Christy!! Why has no one ever told us that!! How many enzymes do you give? He takes 5 with each meal....we are definately trying it!! The poor little man's butt!!!

Kerri - posted on 08/16/2009

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Hi Julianne, I have 3 kids... 14, 10, 7. My oldest and youngest both have CF. My middle isn't even a carrier. Both of mine, I feel have been lucky. Even though we are 'Delta f-508's they have been very healthly. They take Pancrease enzymes, multi-vitamin, and do an acapella for airway clearance. My youngest just started on the Vest for added clearance. He likes it and thinks it's funny. We also use the saline and try to keep their sinuses moist. We are in the Sacramento California area and have been blessed with the UC Davis med team for our CF care. All I can say is to take one day at a time. We've never treated them as if they had a life threatening condition. Some days are harder than others but as long as you have a good support system, you'll be able to hand anything. ~~~ Kerri O.

Christy - posted on 08/14/2009

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Keenan had pseudomonas at 2 yrs on his routine culture and we did the 1 round of TOBI and luckily got rid of it. We did do a study for how to keep the pseudomonas away and hopefully the results will come out soon. We were on the TOBI quarterly for 18 months plus placebo vs cipro (unknown which). I suspect the results will be that quarterly TOBI + Cipro for 18 months will be the best chance for eradication after the first pseudomonas.

By the way Jill...for Cipro we figured out that it's dissolved in a fat emulsion....so taking the enzymes before the Cipro resolved the terrible diarrhea for my little guy!

Enjoy reading your posts.

We're also involved in Great Strides and fundraising for the CFF. And we've been on the Family Advisory Council of our CF Center for over a year to help make a positive impact.

Christy

Renee - posted on 08/10/2009

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Hi girls. I have a little 2 year old with cf. We live in australia, victoria. She has done well so far too. She is on creon 10,000, electolyte (salt replacement), vit e and multi vitamins and 1 antacid tablet a day. We just do physio once a day if we are lucky, and i just do that by tapping her. Ive never seen a vest, only on a video, i reckon they would be great! She was diagnosed at birth with the screening test. At this point shes still not flemmy, only a tad at lunch time for some reason. So we call that her lunch time cough. I love being in touch with other families with children with cf, specially ones in america because i feel you guys are more advanced than us in cf treatment. Its great! Cant wait for the cure in the near future im sure! renee.

Christy - posted on 07/27/2009

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Hello! I have a 3 year old son with CF. He's doing great! We are truly blessed for our children to be born at this time when the fix for the defect is so close! We live in Charlottesville, VA where we have a great CF center at UVA. My son was diagnosed with his newborn screen at 10 days of age. He's on Pulmozyme, hypertonic saline, the Vest, enzymes, ADEK vitamin and has done amazingly well! No hospitalizations. The saline has been our miracle! We know God is in charge and has a plan for all of us. Christy

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