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Cystic Fibrosis Message Board

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Re: Cf clinic Q's
Jul 27, 2005
Is this an accreditted CF clinic? We go to a local non-accredited cf clinic and it always seems like a waste of time to us. We see a specialist in the city a few times a year about 240 miles away that we're much more happy with.

The local clinic is just to reactive. They lecture us about the medications the other doctor has ds on, doesn't think we should be doing CPT or using drugs until DS gets sick, while our doctor in the city is more proactive. Get into the habit of CPT, use drugs to prevent lung infections...

As far as vitamins -- CFers need extra ADEKs and regular vitamins don't provide what cfers need. We give ds 1 ml of vitamin drops twice a day, a vitamin K tablet once a week and I put a drop of A&E in his morning milk.

We've heard they can have the vest at about 2 1/2, as long as they're big enough. Our doctor in the City prefers us to wait until ds is 4 because he feels at this age he'd get a better treatment.

BTW, we just walked out of our CF clinic appointment this morning because of concerns with the common waiting room and cross contamination. We are supposed to be assigned a private room right away and a pediatric pulmo, gastro and regular doctor come to see him, an rt, social worker and a pediatric pharmacist -- more and more people started arriving and we didn't feel safe having our toddler shoulder to shoulder with other CFers. We weren't going to risk his health. I was just furious about the whole thing.
Re: Cf clinic Q's
Jul 27, 2005
What I've found with the local clinic when they don't agree with medications or equipment, it has to do with cost savings. For awhile we couldn't get ADEKs and I used regular baby drops and we were told by the dietician that we should only do that for the short terms because DS didn't need the extra iron those vitamins had and he DID need the zinc that was in the pediatric drops. Someone told me recently that regular vitamins don't work on CFers 'cuz the vitamins go right thru them.

When we've asked about the vest we've gotten vague answers and they talk about how most their patients use the flutter -- those people are older and are able to do it -- a toddler isn't and the flutter is relatively inexpensive while a vest runs about $16,000.

At least you've got some other options in terms of clinics.
Re: Cf clinic Q's
Jul 28, 2005
Personally I've always just taken regular vitamins. Currently taking ONe a day extra strenghth. And extre vitamin K and D. ADEKs don't have enough of the other stuff one needs and as an adult it would take quite a few ADEKs to reach the level of needed vitamins. What I'm on works for me and I've heard other CFers say the same. PLus one might not be deficient in A,D, E and K(I only have issues with K and D)

I don't go to a CF clinic anymore, I use private practice docs. The CF clinic I went to shared a waiting room with thhe ped hematology/oncology clinic,the spina bifida clinic and another clinic. I know CF patients and cancer patients don't mix! Overall the cross contamination policies stunk! PLus it was an all day affair(I remember having a 9AM appointment and seeing the doctor at 3PM, one of the first appointments but last one seen). Anyway this was a CFF accredited clinic. I won't get into my feelings on the CFF.

Of course some would say I'm bad...I had a friend who had CF and was around her, I swim in rivers and lakes etc. I didn't go to school thought(homeschool) and avoid large crowds as I always get sick when around a lot of people
Re: Cf clinic Q's
Jul 29, 2005
Our doctor and dietician have both told us that ADEKs doesn't have enough K in it, that's why we also give ds a 1 mg tablet of Vitamin K once a week. We also put a drop of a & e in his morning chocolate milk and he gets a double dose of adeks -- one in the morning and one at night.

Does anyone take fish oil. DS had DHA in his formula and have heard about studies to decrease inflammation -- wonder if it'd do any good or if he'd have to take wayyyy to much fish oil to make a difference.
Re: Cf clinic Q's
Jul 29, 2005
They do labs once a year for ds and increased his vitamin K at 18 months from 1/2 a tab to a whole tab. His ADEKs has remained the same for at least a year also.

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