Mother from 6,5 yrs old suspected of having CF...

[anonymous]

Dear all,
Thankx for reading this topic.
My little girl (6,5) is suspected of having Cystic Fibrosis.
She has pneumonia at the moment, is very skinny,
has heavy constipation problems and becomes ill from warmth.
The pediatrist scheduled the sweattest this Thursday and we can call
on Monday for the test results. The pediatrist appointment is 1,5 week later.

I'm very, very concerned and have lots of questions:
- Do you recognize the symptoms?
- Are there other parents on the forum with children diagnosed after the age of 2?
- How did you handle the uncertainty waiting for test results??? I don't sleep at all...
- How to handle emotions after a positive test result?

Thank you all for replying!!

Regards,

Wendela from the Netherlands

mother of a precious little girl (6), suspected of having CF. <img src="i/expressions/heart.gif" border="0">

 

[denise]

Hi,
My son was diagnosed at 5. I remember people telling me that if he had cf it would be better and then they would know what to do. My son has thrived on the treatments. Now the doctors always take me seriously when I tell them what is up with him. I like knowing they can do something for him.

When I was waiting for the results, I kept reminding myself that Nick was the same person before the test and that the diagnosis did not change all of the things I love about him.

I am still scared. I think that is just part of having children with cf.

 

[ErinsMommy]

Hello...
some advice about waiting for results. Umm.... My daughter is a month old today. She got the cheek swab testing done a little over a week ago. They're going to do a sweat test, they just can't yet because she's very small and she isn't sweating just yet. But this test is also pretty accurate. There <i>are</i> false positives... but verrrrry few and far between.
The week that I waited for the results went by pretty slow. However... I have been expecting the highly probability of cystic fibrosis ever since I was pregnant with Erin, still, it doesn't change how hurt you become when you get the news. Just.... stay strong. For you, your daughter, your whole family. It's important. When I gave people the news of Erin having cystic fibrosis... they were very upset. But I didn't cry... I didn't even act like I was very sad because then I think I would just feel worse.
Waiting is going to seem like forever, but it's only a couple days and with a 5 year old I'm sure that your days are very busy and fly right by so the results will be in before you know it.
I hope it comes back negative! I wish you and your family the very best of luck. Stay strong.

 

[anonymous]

Hi Lindsay,
Thanks for your answer. I also read your topic and just want to let you know
that I'm thinking of you and little Erin and hope you stay strong and positive.
I also believe there's a great future ahead for you and your little one.
(apologize if my English is not 100%, I'm Dutch)
Bye, Wendela.