Two positive sweat tests

[Mum03]

Hi! I've been reading your posts for a while but this is my first post. I think I'm looking for reassurance.
Two of my three children (2 and 10) had positive sweat tests and we are now waiting for blood results.
My 10 year old had polyps and was referred for a sweat test. I got his brothers tested too because the youngest is salty tasting - I didn't know it was a symptom till last week.
It's come as a massive shock as they've always seemed so healthy. My 10 year old is tall, athletic and heavy for his age and apart from a few chest infections when he was a baby and a bout of pneumonia in February he's not had any notable signs. The 2 year old got massively dehydrated at 11 months after refusing food and liquids for a few days after having a cold and was diagnosed with FTT but has since bounced back and his height and weight are also above average.
There is a rare mutation in my family; 875+2T>C.
It just doesn't seem possible though that they have CF.
There's so much emotion, and fear, I'm struggling to process it and I don't want it to be true. What are the odds that it could be something else? Please help

 

[kenna2]

It is possible to have CF and not have any tell tale signs for years. I was diagnosed at 7 and some people on this site have been diagnosed as adults. I know this must be a huge adjustment and shock to you and I'm sorry. But think of the good things if it is. You're getting answers as to why they are sick and get the correct treatments to help them thrive. There also is a huge number of drugs coming out to really help that's really exciting. We are a great community here and will help you in anyway we can to answer your questions and cope with this. Keep us updated so we can help you and get you to an accredited CF clinic so you're getting the right treatment by CF doctors.

 

[Mum03]

Thank you. We live in Bahrain and there's only only one CF clinic here.

 

[JustaCFmom]

re: Normal Anxiety

Hi Mom03,

First, welcome! This site is full of helpful information and people. You are not alone!

I have 3 kids with CF, now ages 14, 22 and 27. They were diagnosed 7 years ago and they have "atypical" CF. They don't have any digestive issues. In general, the statistics for people who are diagnosed when they are older are better. My kids lung functions are over 100% pred, healthier than many people! They are quite healthy and don't cough unless they are sick. One is married and they are expecting their 2nd child; and another is getting married next year.

I also had a positive sweat test but I have hypothyroidism and no CF symptoms. People can test positive & not have the disease, but that is less common.

I think the main thing is the symptoms, along with the sweat & blood tests. When will you get an answer? The waiting is so hard!

We go to Hadassah, in Jerusalem, for our care. They are a top center & I know they also treat people from this whole region. They have at least one doctor who speaks Arabic, and translators available.

http://www.hadassah-med.com/children-site/departments-and-units/cystic-fibrosis-center.aspx

http://hadassahinternational.org/ha...who-will-take-care-of-them-back-home-in-gaza/

http://www.hadassah-med.com/childre...center/cystic-fibrosis-our-center-in-the-news

Prof. Kerem, who heads the CF Center, usually answers his e-mails, if you have any questions for a medical expert: EitanK@hadassah.org.il

Good luck! CF is a manageable condition & it sounds so much scarier than it is. We live in exciting times, especially for CF.

 

[Mum03]

Thank you for your reply- it's so reassuring to hear from other parents whose children are healthy with CF. I'm grateful of course for everyone's support and advice even those who aren't doing as well - but at this point in time i really need to be able to believe my babies will be ok.
They told us we should get the blood results back in 3 weeks. My mother in laws family all have thyroid issues and my father's family have kidney problems, I also read a study about Israeli Bedouins who have a mutation on the CA12 gene that can cause positive sweat tests so I'm still holding out hope that it will be something else.
How did you cope when they were first diagnosed? Did you find out about all three at the same time? How did you explain it to your children? I'm sorry for the personal questions; I'm terrified of the unknown and I feel like a failure for not being able to protect them. I know i need to stay strong for them but they're my everything.
Thank you for the links and email address. I'll write to him once I get my mind together.