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anonymous
01-14-2004, 10:55 AM
I was hoping to get some opinions.We have just recently moved and we just had our first appt. at our new CF Center. This center, in Tulsa, OK, uses the Denmark protocol where they see patients once per month and conduct a bronchospy (sp) every month where they stick a tube down his nose and suck out mucus. As you can imagine he did not enjoy this.This is our third CF Center (1st - Indianapolis; 2nd Ft. Worth) and our previous centers did not use this protocol. We had a visit every quarter (assuming good health) and they did a throat culture once per year.Is there anyone who has been on the normal visit cycle and then switched to this Denmark protocol? I understand their reasoning in trying to catch bugs quicker but this seems a little invasive.If this Denmark protocol is so good then why don't all centers use this?Just trying to get some answers on what is best for our son. Our other option would be to go to the Little Rock Center since we live in NW Ark. Any comments would be appreciated.Thanks]Mike

Liza
01-14-2004, 04:18 PM
Hi, I know of the procedure you are talking about but didn't realize it actually had a name. My girls were once seen in Ft. Worth too back in 91-92. We are military. I first heard of that being done when we were stationed in Germany, but attending CF clinic in Maastricht, Netherlands. Our Dutch doctor told us of how they used to suction out mucus on a regular basis but had stopped because it didn't really seem to do much good. Within a matter of weeks the same amount of mucus was back. A never ending cycle. Yea, you kinda think... well if that old mucus is gone and more has built up that if it hadn't been removed how much more there'd be. My husband spoke with them in depth compairing our US clinics (the ones we'd been too) and how they did things there in NL. They were wonderful. Our girls are in good health and we'd go back in a second if the opportunity arose. However, I have heard that Denmark has the "healthyist" CF patients. If this in fact is something that they do, and not just a name attached.... maybe there's something to it. Is this clinic a CFF clinic? I have heard there are clinics around that are not associated with the Foundation. Although I've not come across one and we've been to clinics in North Carolina, Dallas, Ft.Worth, Florida, Arizona, the Netherlands (different CF organization), Ohio and now Nebraska. The one in Florida was so small and they only went to clinic there about 3 or 4 times, we were in there so little I didn't even really get to know the staff. I can imagine though that you or your son do not look forward to those clinic visits. My girls are 16 and 13 years and would absolutly refuse to have a tube stuck down their nose or throat unless they were completely knocked out. Check with the CFF and see what they have to say about this Denmark protocal. Like you said, why aren't all clinics using it. Much luck and let us know how it's going. Liza

anonymous
01-14-2004, 04:28 PM
I did not clarify why they suck the mucus out. It is not to get it out but to culture it to see what will grow so they can aggressively treat w/antiboitics if something bad shows up. This clinic is affiliated w/ the CFF and the Dr.'s in this clinic actually went to the Neatherlands to follow their Dr's around and see what they could learn. The Dr's seem good and very knowledgable I just feel they don't do enough to seperate patients who might have b-cepacia, etc. and there were just some other things that concerned us with this particular clinic and their treatment regimine. Thanks for the comments

anonymous
01-14-2004, 07:52 PM
Mike,I have never heard of such. I am seen at the Medical University of South Carolina. My physician is awesome and is a great educator. He comes from UNC. Our clinic is great and he travels all around the world teaching seminars on CF. I have had a few bronchs. done. One for a study and two for cultures. I think going to the doctor every month is just a waste of $! I go every 4 months, unless I am feeling bad. I would be more than happy to give you the email to my doctor if you are interested. He is wonderful! Alaina

anonymous
01-14-2004, 09:14 PM
My docs have me on 4 straight months of Colistin right now. I'm seen at the All Children's Care Center in Tampa, FL for my adult CF doctor. He puts a lot of the CF patients on colistin for the winter to nuke the bugs, it kills pretty much anything except the higher echelon of bugs like B. Cepacia.

anonymous
01-14-2004, 09:45 PM
From the seminars I have attended on CF I been taught that the US tries to follow Denmarks lead. The main reason we don't have scheduled cleanouts every three months as they do, is that our insurance companies will not pay for it unless it is needed to treat an acute infection or exacerbation. Denmark has socialized medicine so everyone can have all the healthcare they need. Denmark does have the highest life expectancy for Cf patients worldwide. Here in the US we need to be carefull about reaching our insurance caps (limits) so I would talk with the DR about not coming in as often when everything is going well. The important thing with CF is prevention, so don't wait too long though.