When you visit your doctor

[anonymous]

Just wondering what the usual precedures are when you go for your check up? I have doubts whether my doctor is doing a thorough enough check on Archie. I hear that other people's doctors do throat/mouth swabs to check for cultures - pseudo's etc? All my doc does is listen to his chest and ask me how everything is. I remember someone saying that their child cultured pseudo's but had no symptoms and they just picked it up from a swab - is this correct and do you think my doctor should be doing swabs or other tests? Archie is 8.5 months.

Sal - not logged in - sorry

 

[anonymous]

My son who is 3 1/2 yrs old goes to clinic every 8-10 weeks and they do a culture every visit. He has cultured psuedomonas for about 6 months now, so has been put on the Tobi/Cipro cycle as a result. He's been cultured every visit since his diagnosis at 10 months. They also do an x-ray every 6 months. Used to do infant PFT's every 6 months as well. Now they do PFT's every visit. We also talk to the nutrionist at every visit as well. The usual listening to the chest, checking his fingers, weight check, etc.

Mom to son, 3 1/2 w/cf

 

[Alyssa]

Are you going to a certified CF clinic? It was my understanding that cultures (sputum if possible, but at the very least throat swab) was pretty much standard protocol every three months. Yes, it is possible to have PA and not really have much change in symptoms. I think it would be well worth asking for them to do them at each 3 month visit -- that is the recommended guideline.

Visits for us usually include:

Height, weight, blood pressure
PFT's
recap of what's been going on in our lives
physical exam
throat or sputum culture
nutritionist consult if necessary
respiratory therapist consult if necessary
labs - annual plus anything in between that might come up
x-rays once in a while when necessary

 

[dyza]

occaisionaly my son gets a nasal secretion if he has a runny nose when he is at clinic other than that its physio followed by swab, then the dietician, followed by the doctor, sometimes a phycologist comes in to see us. Every three months they test his pooh to check how he is doing-- currently he takes no enzmes, his pancreas works really well, not 100 %, but well in fact he just started vit A drops--

Craig

 

[Salli]

Yes we live in melbourne Autralia and are going to Monash Medical centre which is an certified CF centre. I'm just wondering when they started doing swab tests? Does anyone know how uyoung they start to do these?

 

[babyjaden2004]

We always get a throat culture done at each visit which is every 2 months. And the usual routine of seeing the nurse, the doctor, dietition, respatory therapist and the social worker. Both the doc and nurse listens to her lungs, and heart and the doc checks her fingers and looks in her mouth and nose and feels her belly.

 

[anonymous]

Hi Salli,

Its eli here, not logged in. I too go to a certified CF centre here in Sydney Australia and our clinic does not do throat swabs or cultures. Although another mum i know goes to another certified clinic in a different suburb in Sydney and they do throat swabs every visit.ie:every 8-10wks.

Our clinic only choose to do yearly bronchs, as they seem more appropriate. I do not agree, as we don't know what is happening in between those bronch's. That is where my concern lies.

I have been fighting with them for months over this, and last vivsit i demanaded it done, so the pysio came in and did it against doc's rules. They didn't call with the results, so i called up and asked and they ended up clear. Thank god, or else i would have been on their backs in no time.

I'm still fighting to have them done every visit. So just speak to your doc's and raise your concerns. Good luck and let me know how it goes.

Eli