ANyone have a child with Cystic FIbrosis?

mjj79

Not really "fun or games" but I didn't know where else to post. I'm wondering if there are any parents of kiddos with CF. My 3 yr old has had what we thought was asthma since infancy. 3 hospitalizations in past 2 yrs for resp. distress. Anyway, his doc ordered a sweat test and it was 50, solidly in "borderline" area. We did another today, but of course won't know till MOnday now.

The waiting is driving me CRAZY. Have any of you had kids test borderline and end up having it? He is youngest of 5 and we are thinking that if dh and I were carriers we would have known by now, right?

I'd appreciate any thoughts/insights.

Thanks

mjj79

(bump)

Active night. THis already got bumped out of "recent posts"

danifo0811

No kids with CF but I did do genetic testing for it.

In the absence of a family history, it is unlikely you would know you were carriers. With the number of kids you have, you would probably know but it is still possible to have not had an affected child yet.

Sweat tests are hard to do on young kids so it is possible to still be normal.

Is there anything besides the asthma to indicate CF? Many CF children are quite thin and have vitamin deficiencies.

If it makes you feel better, I do know adults in their 30s with CF who are doing fine. Treatment is much better than it used to be.

mjj79

No kids with CF but I did do genetic testing for it.

In the absence of a family history, it is unlikely you would know you were carriers. With the number of kids you have, you would probably know but it is still possible to have not had an affected child yet.

Sweat tests are hard to do on young kids so it is possible to still be normal.

Is there anything besides the asthma to indicate CF? Many CF children are quite thin and have vitamin deficiencies.

If it makes you feel better, I do know adults in their 30s with CF who are doing fine. Treatment is much better than it used to be.

Thanks for responding! The asthma is the only issue. He is a good height and weight. Really hoping and praying that the test was a fluke.

ladytinkerbell99

Hi,
I am sorry to read the drama that you and your family are going through at the moment.
I do not have any children. I have spent many years working with families and children with CF.
With anything, the not knowing is always the hardest.
I will keep you in my thoughts.

As someone else mentioned, being diagnosed with CF is not the same today as it was 10, 20 and 30 years ago.
I am so grateful for all the fundraising dollars that have gone into research.

Please, do not take what I am saying to indicate that I am minimizing what your family is going through. I am not.
I wish there was something I could say or do - to help.

If you would like to ask some private questions, please just send me a private note.

Take Care and sending you lots of hugs.

roeann53

My son has cystic fibrosis.. it could be possible to have 4 others who don't have it .. but if the test is borderline it could also be a fluke. As for knowing if you are carriers.. its possible, we didn't have a clue either. Our son was a chunky little critter who just seemed to get constant ear infections so they tested him (just in case) prior to putting tubes in his ears and the test came back positive. He's now a sophomore in college and doing pretty good. Let me know if I can be of any help..

ctgirlscout

I'm sorry you are going through this right now. My nephew has a strain of CF. Since birth, he has had more than 40 hospitalizations (he's now 19). He can go 2-3 years without getting sick, but then can have 3-4 hospitalizations in one year. Last year, they actually had to give him a 4 hr. pass from the hospital so he could attend his high school graduation! There was no history of CF on either side of the family, so we don't know where it came from.

There have been many advances in treating this disease, so please don't despair. My nephew leads a fairly active lifestyle, and is in his second year of college right now. If I can be of any help, please message me.

mjj79

Thank you all for your encouraging stories/experiences/ words. It helps to hear from people who have been through this or lnow about it. Thank you!