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Date Joined Oct 2008
Total Posts : 1
   Posted 10/13/2008 3:44 PM (GMT -7)   
Hi everyone. I hope you don't mind me posting a topic on your site.
My daughter has got CF, shes just about to turn 10 and we found out when she was 5mths old but luckily she has kept really well so far.They've just told us that they think she has CFRD and I'm trying to understand what that will mean to her,I'm scared and frightened for her and me, shes an amazing little girl and means the world to me, I love her to bits and blame myself for her condition.I want to get a second opinon as I've been reading up on it and its really unusual in kids this age and I'm not sure if they did the test how sites advise they should be done and I feel they are trying to rush us into starting her on this like they did with wanting her pipe fed to get her weight on.I'd just like to hear your stories so that I can try and understand what she's going to be going through and even thought about getting the test kit and doing it on my self so I know.People tell me its not my fault but the fact that the condition is genetic makes me think some how I should have known,it really breaks my heart.I'd appreciate anybody taking the time to answer.thanks very much rob

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Date Joined Feb 2007
Total Posts : 1050
   Posted 10/13/2008 10:51 PM (GMT -7)   
Hi there bladerunner, welcome to the site,

Firstly, of course we don't mind you posting a topic, that is what Healingwell is here for:)
Secondly, do not blame yourself for your child having CF. You didn't one day decide 'oh yes, I'll have a kd today, I'll make sure it's the CF egg that gets fertilized. You could not have known, there was no way. CF tends not to show up in histories of families. The only way you would have known, is to have been genetics tested yourself, or for either you or the father to have CF. Carriers show no symptoms, as the gene doesn't get activated as a single gene. You could have not stopped this from happening, unless you didn't have kids at all, and it's human nature to have children.

CFRD-there's still a lot unkown about it. What I am told by my dietician, is that is if it's going to trigger, it will do. There's nothing that can be done too stop it or hold it off. I have friends who live normal lives (well as normal as CF gets) that are in adult hood, and have been dealing with CFRD since being little. They manage it really well, and only have real problems when they have to have IV treatment, as the strong meds can mess up the system. I don't have CFRD myself, only slightly low sugar levels when I've been busy, so can't tell you how it's effected me, or going to effect me if I do get it in the future.

The treatment may seem a little rushed, but the sooner they get your daughter on a stable dose of treament, the better it will be, as then they won't have to keep having your daughter back often to adust treatment.
I do know whats it's like to get rushed into doing things, and do sympathise with you. I recently have had similar problems with my own treatment.

I hope you're little one is well, and I hope you can adapt quickly to the change with diabetic treatment.


Best of wishes


Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
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Had a Port-a-cath fitted on chest wall since Nov 05
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Post Edited (Darkies Gem) : 10/14/2008 12:09:06 AM (GMT-6)

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