We recently moved to a new state and are going to a new CF clinic. At our old clinic our son saw Pulmo, GI, Resp, dietician, nurse, and social work. At our new clinic he only sees pulmo and dietician, neither of which seem very helpful. Our son has a wheat allergy which is making things very difficult as far as his diet and the dietician is absolutely no help. He has aways taken the liquid multi vitamin designed for CF kids. Today they told me they wanted me to get him centrum jr chewables. Any other kids on these? It was my understanding that kids need a water soluble forumla because they can't absorb anything else. Any thoughts on this? They also gave me a rx for extra vit E, but they did not do any labs, none have been done for about 1 yr, to find out his vit levels. Does this seem odd? The pulmo dr is basically the resp therapist but he had no idea what kind or nebulizer I needed or anything about the fact that I was told I need to wash, sanitize(boil) all nebulizer parts. My son is only 14 mo old so we've only been doing this for a year. Am I just stuck on how things were taught to us at our old clinic? Another thing that was different was about when he would get a vest. Our old resp. therapist said about 2 yrs, depending on weight. She thought is much more effective than manaul percussion. This dr is saying around 7, and he doesn't think it is that wonderful. Do I have reason to be concerned? I am really considering changing clinics. Any thoughts would be appreciated!

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.

Yes it is an accredited facility. I am also concerned about the waiting room issues. At our old clinic they would offer us a room right away and a mask if we wished. As a matter of fact the people comming in to see him didn't even gown, mask, or glove.

Thankfully we live in an area where we have 3 other clinics to go to. I just felt so frustrated rather than helped after I left yesterday.

Sounds like our local clinic -- social worker basically tells us we aren't eligible for any programs, the Pulmonologist thinks ds should live in a bubble and shouldn't go to school or out in public yet has no problem with the common waiting room, the pediatrician thinks ds is getting too fat ???! Only thing I like is finding out that we're doing a good job when we get height & weight info, getting a culture to see if everything is okay and getting a bag of free neb cups.

After this morning, I'm so frustrated and upset I'm ready to just schedule a well child visit with the doctor we like and forgo the CF clinics. They keep telling us they don't have any cepacia cases, but there are other bugs to worry about and I know for a fact that a local man awaiting a transplant died from compliations of cepacia. Plus, how do they know what other patients are growing until after the appointment when they do a culture. THey've got a lot of new patients and who knows what they've got.

Well at least you get some positive feedback about weight etc.... I got none yesterday. Our old dr was always good at making us feel like we have done a good job and all our hard work has paid off. This dr, nothing. Our son is 26.5 lbs so weight wise he is doing excellent, growing at around the 80th percentile. But as you know, ALOT of effort goes into getting those results. A pat on the back once in awhile would be nice. Makes you want to keep it up.

Another thing I hate, they put all those cool toys in the waiting room, make you sit out there, and not expect a toddler to play with them?!

I read that you agree with me about the ADEK. Do you have any idea why they would tell me to get centrum? That just seems so wierd to me?

Thanks for your replies!

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.

Our son is enrolled in the WEE Care program which offers vitamins and enzymes free of charge for the first two years. So I guess I don't understand why they just won't keep him on those. The dr here never even heard of wee care which also makes me question him. It is a nationwide program offered by Solvay Pharm. (I think) to all newborns who have been diagnosed. They are wanting to change everything which makes it more difficult for us. As long as we can get the vit and enzymes relatively easily I would like to stay with those. Also we know that he has been doing well with them.

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

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.

Shouldn't there be labs drawn to find out what my sons vitamin levels are before they tell him to take more of something. The last labs he had were drawn about a year ago, he was a few months old, on TPN, different formula. The dietician just said, "I just put everyone on extra E". One size fits all doesn't fly with me.

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.