cff accreditted care center

[amber682]

I need your opinions on this, so here goes. I'm pretty sure a cf
patient needs to go to a cff accreditted care center, right? So I
go to the CFF website to see if my son's clinic is. Our clinic is
the asthma/ allergy/ pulmonology center of Hasbro Childrens
Hospital. It is not on the cff accreditted care centers list. But
another doc from our clinic is on the list, but listed under a
different hospital in the same town (Brown University Medical
School). And even though we always see the same doc, our
appointment reminder cards always have this other docs name on
them, not my son's doc. And I'm sure the receptionist who schedules
the appts. knows who my son is seeing. I just wanted to see
what you all think. I hope this makes sense, I didn't know if I
should leave out the doctors names.  Basically, our
clinic is not on the list, but a Dr. who works at a clinic that is
on the list  works at our clinic.  Could it be that she
sees adults and he sees the pediatric
patients? <img src="i/expressions/face-icon-small-confused.gif" border="0"> 

 

[amber682]

Ok, I know I just posted this, but I went and looked up more info
about Hasbro's pediatric pulmonology center and find its considered
a division of the pediatric department at Brown Medical School. So
does this mean it is cff accreditted? I'm confused and its late so
I am going to bed!<img src="i/expressions/moon.gif" border="0">

 

[dyza]

Sounds like the same set up we have in Scotland. Our son attends our local hospital where the CF team have a 'satalite' clinic, the Cf team are based in another town and in a different hospital. There are 3 main centres in Scotland, i guess a small Us state might run the same way. I'v heard of others saying about satalite clinics

 

[thefrogprincess]

You need to look at the whole picture of his treatment. Many factors go into making a cf center accredited. Does your son see a nutitionist or dietician? Do they have a social worker available if you need one? Are his vitamin levels taken at least once a year? Do they do chest X-rays once a year or more? Do they particiapate in research studies? If they do then they are in on new treatments/medications as soon as they are available.

He doesn't NEED to be seen at an accredited center, especially if you are happy with the care he and your family recieve. But if you feel that something is lacking, change centers.

 

[amber682]

Thanks for helping me clear this up. The answer to almost all of
those questions is yes, except we have been going there for 14
months and vinny's vitamin levels have not been checked. (maybe
because he's only 18 mos. and on vitamax? I'm not sure) Also, he
hasn't had a chest x-ray since diagnosis, although right before he
was dx he was hospitalized and had several while the docs tried to
figure out what the problem was.  I'd like to bring this up to
the dr at the next visit.  I absolutely love vinny's doc,
nurse, and the dietician. The social worker is new and not much
help.

 

[sue35]

I go to an accredited center and the dietician isn't help at all. She just says what the textbook says and doesn't make any exceptions to my own life. Also, my social worker comes in every time I see her and asks how I am dealing with my parents divorce. My parents have been together for 30 some years and are NOT divorced!

Needless to say I am not happy with the "extras" of this place. If you love the doc and the others I would say stay for now. Loving your doctor is most important because it means they will work with you to care for your child.

 

[letefk]

You might consider asking about the vitamin levels. My youngest will be two next month, and has been followed at the clinic since she was 9 months. That was one of the first things they did, and the dietician always goes over that data with me each visit.

I would suspect that they are checking the levels, and that they just have not spoken to you about the test results because all is fine. My clinic tends to have a "if its fine, don't expect to hear about it" approach to test results. If they are not checking, I would want to know why. This is really important information, as it is how they determine if a CF child is getting the resources they need from what they are eating.

 

[amber682]

How do they test for vitamin levels? I assumed it was a blood test,
and he hasn't had any of those. I do know if they do a culture and
everything is fine they don't call me, so maybe the same with
vitamins?

 

[Ratatosk]

DS has bloodwork done once a year -- one of the vials -- think for the vitamin D test, they keep the room darkened and the vial of blood covered. DS has been on adeks and vitamin K since he was a couple of weeks old. He gets a throat culture taken at every appointment and chest xrays once a year also.

 

[thefrogprincess]

Vitamin levels do involve a blood test. But its very important. Until I was 16 I went to a center that did not check my levels, then we moved and switched centers. They checked my vits and I was shockingly low on E and D, and because my D was low (probably most of my childhood) I didn't get enough calcium either and now I am in the begining stages of osteperosis.

 

[thefrogprincess]

Vitamin levels do involve a blood test. But its very important. Until I was 16 I went to a center that did not check my levels, then we moved and switched centers. They checked my vits and I was shockingly low on E and D, and because my D was low (probably most of my childhood) I didn't get enough calcium either and now I am in the begining stages of osteperosis.

 

[thefrogprincess]

Vitamin levels do involve a blood test. But its very important. Until I was 16 I went to a center that did not check my levels, then we moved and switched centers. They checked my vits and I was shockingly low on E and D, and because my D was low (probably most of my childhood) I didn't get enough calcium either and now I am in the begining stages of osteperosis.

 

[amber682]

Thank you. I know they have not drawn any blood, so I'm going to
ask at next visit to the clinic.