worried mother

[anonymous]

Hey

Recently i have been told that my 5 year old is showing symptons of CF and they are now carrying out tests to see, im really puzzled as to how my child might have it we have no one on either sides of our familys that have CF that we know off.
He is going for his first sweat test soon and im really worried about what will happen at this test.
I guess im just looking for someone who has been through this who can give me an answer thats not texted book

 

[anonymous]

My 8 year old daughter was just diagnosed recently. Like you we had no family history of CF on either side. CF is a recessive trait, meaning both parents must carry the defective gene. When two people carry the gene and have a child, there is a 25% chance of the child having CF, a 50% chance they will be a carrier, and a 25% chance that they will be free of CF and not a carrier either.
Don't worry about the sweat test, no needles involved. Hopefully the tests will come back negative, but if not you have found a great source of information by visiting this site.

 

[JazzysMom]

A majority of CF diagnoses in the past have been with no family history that isnt a real surprise. The sweat test is not invasive so dont worry about that. Once you have results I suggest you come back for more answers if the test if positive or even borderline. Good Luck!

 

[LoveShines4Austin]

I've been exactly where you are. *hugs* Hang in there and you really have found a great source of honest and to the point help here at this forum.

13 years ago when Austin was diagnosed, the sweat test was fairly simple. They just put a solution (I have no idea what it was) on his upper arm and then attached some very small electrodes to the skin. Then they covered it will a saran wrap like cover. All they did was run a VERY light current to heat up the area to produce the sweat I guess. Austin said it tickled and was kind of uncomfortable but he made it through. He was 3, so any testing like that scared him. He had it done twice and like everyone else said, it in not invasive. It may have changed over the years, but it's still simple, I'm sure.

 

[supermanfan]

CF is something that has a way of just poping up when you are unaware... there is no history on either of my parent's side of the family... my two sisters don't have CF, and I'm the baby... it just showed up in me. Oh, and I'm related to Mark Twain a.k.a. Samuel Clemmons on my dad's side, and General Robert E. Lee from the Civil War on my mom's side. There's no telling of any history back that far, but back then when medicine wasn't as advanced many children died from unknown reasons other than being sickly, and it could have been CF.

 

[mustangmousa]

Same thing with me....no one in my family had even heard of CF before I was diagnosed. I have 1 sister and 1 brother, perfectly healthy. I'm the baby too, so it was quite a shock to my parents. My dad actually started working on our family tree and found that a number of children died at very young ages back in the 1800's. Who knows, maybe it was CF.

Martha CF, 30

 

[supermanfan]

Yes. We have a book on our family from my dad's side (how I'm related to Mark Twaine) and yes there were tons of deaths among young people that were a mystery. Luckily we have advanced with medicine. I know modern medicine has kept me alive and well

 

[EmilysMom]

After Emily was diagnosed, we tried to trace family history and found nothing on Mom's side and Dad's side had nothing either, so CF can appear in any family with no history at all. My younger daughter got to the age of 15 before she was diagnosed with Von Willebrand's Disease which is a bleeding disorder (also genetic) so there is a lot of stuff out there that you have no idea about until it hits your family.
Hang in there and come here for honest supportive people and answers!

 

[anonymous]

My daughter Katie (7) was just diagnosed in October this year. She has very mild symptoms of the disease....thankfully no respiratory problems...yet! She is quite small for her age and had recently lost weight in between doctor's appointments. The testing for this horrible disease was quite easy. I was really surprised by that. They immediately tested my 2 year old, which luckily came back negative. To my knowledge we have no history of CF, but then again, we really haven't looked for it.

Katie just recently started her enzymes and seems to be gaining a little weight. I just pray that her disease does not get worse before advances in medicine are made to make the disease GO AWAY!

C McDaniel, mom of Katie

 

[anonymous]

it is kind of hard to trace CF since the disease itself wasn't even recognized until the 50's. Often children died young for various reasons early on in the century, and it could have been CF, but no one would ever know.