son being tested

[clintnicole]

My son is the smaller of the twins and has been sick with chronic lung problems since Christmas of 03. They did the blood test and now we are just waiting. My son alreasy has cerebral palsy and this would just be another thing to add to his struggles but I was wondering , if he has so many symptoms of this diesease what are the chances of this test being negative. It is so scary and my husband wont even talk about it... He already is on steroids and breathing treatments to try and keep the fluid out and his oxygen sats usually run 95 or below. HELP any info or insight would be greatly appreciated
Thank you
Nichole Ellis

 

[anonymous]

I have a nephew with many symptoms of CF but his sweat test was negative. You just never know. I'm sorry for what you're going through.

 

[anonymous]

One thing that concerns me about your post was that your son had a BLOOD test. By testing the BLOOD for specific mutations in your son's DNA, your results would leave you with 2 options: 1) a positive diagnosis of CF or 2) could possibly still have CF (just the test could not find his mutations). As you see: the blood test alone can NOT positively RULE OUT CF. Why? Because some Blood tests only test for the most common, well-known mutations. Other, more extensive blood tests can find a whole lot more, but still not ALL of the mutations.

The best way to determine CF, is through a procedure called the sweat test. If your son were to test positive on the sweat test, he would have CF. If his test were borderline, they would order the blood testing. If his test were negative (sometimes there are false negatives), he would be determined to NOT have CF (however, with strong symptoms they might still order the blood test). My point is, the doctors should order the sweat test first. Have they already done this?

 

[clintnicole]

They have not done the sewat test b/c the military wants the blood test first. They are only testing for 32 strands. after reading on this forum I feel that it is not enough. When listing the symptoms the doctor all but said this was what it was. He feels strongly that it is there. How would I go about making the other tests happen??? Thank you for your reply

 

[Mockingbird]

The military.... always having their procedures. =-) Is he being tested by a cf clinic? If he's tested by a clinic, they'd probably insist on a sweat test. The only problem I'd see is if the military wouldn't cover it... Not sure how much it costs; It doesn't seem like it would be a lot, but dr. bills can suprise you in the worst of ways. =-) Good luck.

Jarod
22 w/cf

 

[clintnicole]

As far as I know there isnt a cf clinic in the area.... the military will pay for it if I fight for it. and I will... I just have such a strong feeling on this. everyone I know feels that this is what is inflicting my son and as much as I would hate for it to be so this website and the people on it have given me the courage to accept it because I realize that even if he has it there is still nothing my son wont be able to do if he puts his mind to it so for that I thank you all. Should the test be positive for cf the military will move us to a base that has a clinic in the area. I will however be pushing for the other tests so thank you so much for your advice

 

[anonymous]

Do you live near a military base or are you kind of "in the middle of nowhere". Is your child enrolled in the "exceptional family member" program through the military? If not, you need to enroll them in that first. Do you live near a military hospital or anything like that? If so, check with the pediatric sub specialty clinic to see if they have any pediatric pulmonologists that have Cystic Fibrosis experience. If there is not a military doctor that has CF experience, they can disengage you and refer you to one. There is also another "add on" benefit that costs $25 a month and covers up to $1000 more of anything tricare doesn't cover or if you have reached your maximum. You can get information about that throught tricare- it's called the program for persons with disabilities.

If you have anymore military/insurance questions, please dont' hesitate to ask me division902@hotmail.com

Julie-Active Duty Military (wife to Mark Raysbrook 24 w/CF)