when do you question all the tests?

[anonymous]

My son has cf and is 21/2. He was diagnosed at birth through a newborn screening. He has yet to have any symptoms and is taking no meds. We go to a cf center every 3 mo. They have been following his weight and growth and doing throat cultures. Yearly he has chest xrays and bloodwork. That is all fine. We see fellows at this center. The last time we went in dec. The fellow saw a nose polyp she said it was so big it was almost blocking his airway. He has had no congestion, cough and doesn't snore. We went to a specialist who delt with cf children and was an ent. He did not see any polyp and would be surprised to find anything. He scoped him in the office and everything looked fine. But because of his CF lablel he wants to do a cat scan to look at his sinuses. This is to require sedation, iv, causes some respitory effects the whole 9 yards for a 5 min scan. The problem is I'm sure he won't lay still without some sort of sedation. We just walk into the hospital and he starts saying I want to go home. I am questioning the need to preform this at this age just because of his cf. Am I being crazy? I'm just looking for opinions before I decide to call the Dr. to discuss my concerns. Why can't this test wait until he will preform without being knocked out.
Should I question professionals?
Chris mom of 21/2 yr old with cf

 

[seasprite]

Dear Chris,

Yes, you should <u>always</u> question professionals if you are unsure or uncomfortable about something they have recommended. I totally agree with you that a CT scan makes no sense at this time. Why would you expose your child to a substantial amount of radiation when he has no symptoms? What difference would it make if your child's CT scan showed sinus abnormalites? Virtually everyone with cf has abnormal sinuses, but no treatment is necessary if there are no symptoms. Usually a CT scan is recommended in order to provide guidance if there will be surgery to remove a polyp, but I can't imagine subjecting your child to surgery under the circumstances.

Has your child's diagnosis been confirmed through sweat testing and/or identification of mutant genes? If so, what were the results? If not, I highly recommend that you request one or both follow-up tests.

Please remember that you are in many ways the best expert on how your child is doing, and there may be many times when you know what he needs better than any doctor. If a doctor is unwilling to include your perspective in making decisions, he or she is failing to practice what is now recognized as good medicine, and you would do better to find another provider.

Best of luck. Let us know how this all turns out.

Bambi Young (PhD, MPH) -- mom to Jordan (almost 16) w cf

 

[anonymous]

I totally agree with the last poster. That being said, my 6 yr old does have significant health issues related to his sinuses. He had sinus surgery at 4 and will likely need another one in the next few years. He's had a few sinus ct scans starting at age 3 and has never been sedated. Our dd also had one at 3 and did not need sedation either. We just prepared them in advance by telling them they'd be going through a "ring of red lights" and called it a star wars tunnel. IMO, it's one of the quicker, easier tests. HTH. GOod luck with your decision.

 

[anonymous]

Chris,
There is no real harm in having the test done now. It can't hurt and it always helps to have as much information as possible to make decisions in the future. However, fellows tend to be a little over zealous and some will sugest stuff because they have little experiance. It's not a bad thing, they need to learn, but you do have the right to say when enough is enough. Are you at an acredited CF center? This is very important so that you get the best care. You should talk this out with the doc anyway, and see what they have to say. Always express your concersns, no matter how trivial they may seem. I would say go ahead and do the test, if sedation is necessary, the worst part will be the needle. So much of it may seem unnecessary, but with CF things can change quickly and it's always best to stay on top of it.
Debbie
23 w/ Cf