Anyone else w/ an Aggressive Clinic/Doctor?

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lflatford

New member
Hi everyone,
When my daughter was diagnosed, the Doctor told us right away that their clinic was aggressive when it comes to treatment of CF. Our daughter has a mild case of CF. Her pft's and lung x-rays are great!!! Eventhough she is doing so well, she is on a regimen that includes pulmozyme once per day and the vest twice per day. My question is, Is there anyone else who is doing well, but still treats the CF aggressively? Is aggressive treatment the norm? I don't want anyone to think I am doubting the doctor, I actually agree with the aggressive treatment. To me it's prevention....I was just wondering if my doctor is really treating her CF aggressively or is it the norm? Remember my daughter is relatively healthy and normal, only having some minor digestive problems.
 
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anonymous

New member
I've struggled with the same...."If it's not broke, don't fix it" question when my doctor has tried to add something to my regimen. I read an article recently where the CF Centers were rated and one in Minnesota scored very highly and the doctor there had the aggressive treatment protocol. He also had good results with severity of illness, longevity, etc. If I can find that article, I will share it.
After this info. was made public, I think a lot of other doctors started getting more aggressive and pro-active as well.
To answer your question...My doctor is both, really. Sometimes he's aggressive, such as when I have a cold/flu. Other times, it's a wait and see what symptoms/problems (if any) occur from somthing such as pseudomonas, aspergillosis, MRSA, etc. and then treat them if they are flaring up.
 
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anonymous

New member
Lynsey-
I think from what other parents say on these boards that using the vest and pulmozyme is standard treatment regardless of lung issues. Both of my children are healthy and we have been doing cpt/vest and pulmozyme from infancy.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
 
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anonymous

New member
My sister goes to a CF clinic in ND and it is not very aggressive. My parents take her to Rodchester MN once a year for a check up and they always put her on something new that the doctors back here didn't think of. I have heard that they are very aggressive. Another thing is that they explain everything that they do. My mom said that she has learned more from the doctors in MN in the three times they have been over there than she has from the doctors around here.


Beth
 
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anonymous

New member
Hi,
I know exactly what you mean. We go to the clinic here on Long Island, NY and my daughter is considered very mild....diagnosed at 10 and Dr.'s I think are very aggressive. Albuterol 1x per day, followed by Pulmozyme 1x day and 4-5 enzymes with meals and 3 with snacks and ADEKS 2x day. I think this is overkill since she has never been hospitalized and is otherwise healthy. They say it is preventative too. They can't even find the second mutation for Lauren so......
Maybe you have the same Dr. as me!! ha ha. Take Care, Joan
 
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anonymous

New member
Hi
Kait is normally pretty healthy, she does culture pseudomonas and MRSA but her PFT'S are really good (108 FEV1) her doc's treat her aggressively and I love it. She does Pulmozyme daily and her vest 3x a day, when she is sick we increase her vest to 4 x daily, the docs only require 2 x daily but we usually do it 3x. this has been a part of her treatment for about 6 years now. she does go in to the hospital for IV's about once every 2 years, now that she has cultured MRSA it seems that it takes her a little longer to get over her infections.

Kaitsmom<img src="i/expressions/rose.gif" border="0">
 
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thefrogprincess

New member
I went to the clinic in Portland, Oregon at OHSU until I was 15 and I wish they had been more aggressive!!! I remember when pulmozyme came out and my parents asked about it and were told we didn't need it. But when I did finally start it my PFT's jumped from low 50's to mid 60's in six weeks. I wonder what my PFT's might be like if I had started it earlier. I say as far as pulmozy,e goes use it because it is not an antibiotic and resistance isn't an issue. If cost is an issue try hypertonic saline instead (although it doesn't work for everyone). I have a mild case as well but you need to preserve as much lung function as you can now! My clinic (in Seattle now) is very aggressive! As soon as I started going there they were talking about pulmozyme, TOBI, and zythro as options to bring up my numbers. I knew very little if anything about these drugs because my docs in Portland never brought it up!
 
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anonymous

New member
I sometimes wonder to about all the medicines and treatments. My 4 year old gets, 4 treatments a day with albuterol- 2 with vest and 2 with plain precussion. He is also on pulomozyme in the morning, ADEKS, 2tsp of lactulose twice a day, extra 400 I.U. of Vitamin E per day, miralax once a day, prilosec once a day, flonase- 2 squirts once a day, enzymes- creaon 20 and 2 creaon 5's with all meals and snacks, just started pulmocort-- does any one else take this pulmocort????? (twice a day) and right now on cipro. (had a breathing attack on monday night, I am thinking asthma???) I think all these med's may hurt him.............. I guess our doc's a really agressive, but I trust them completely!! Seems like that is all we get done is doing all of his med's and treatments--- good thing he is great about it all.
 
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anonymous

New member
Because my daughter has shown respiratory problems early on (beginning at about 4 mths.), she has always received aggressive treatment. My husband and I are also pretty aggressive with her care, more because of necessity to keep her healthy.

However, as we witness and experience more treatments, procedures, meds, etc. we have learned to voice our opinions or objections if we don't agree on a course of action. We have said no to certain procedures, passed on some meds that may have produced negative side effects. It takes a lot of research on our part, but I think we have made some good choices and have gained more respect from our CF team. I feel like we work together, as opposed to just blindly receiving orders.

Maria (mom to Sami, 2 1/2 w/cf)
 
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anonymous

New member
Hi Lynsey,
I was just curious, because you said your daughter has only mild digestive problems, so I was just wondering how she was diagnosed. Because my son has "mild" digestive problems, too. They tried to do the sweat test on him, but it didn't work. They said they didn't think they needed to re-do it, because they really didn't think it was CF, but I have still been worried. So, I am just trying to decide if I should be vocal and go back and say, look, please just do this just to be sure.
many thanks,
Sonya
 
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kathiel

New member
Sonya,
I would be aggressive and request another test and maybe genetic testing to be sure. I just took my son for a 2nd sweat test and it came back borderline so I am fixin to fight those who I must to have genetic testing done because he shows so many of the symptoms that my daughter does.
Follow your gut feeling, its your baby and mom's know their kids better than anyone else.
Kathie
 
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lflatford

New member
Sonya,
I think you posted on this earlier...right? I definitely recommend ordering another sweat test!!!! My newborn son (who does not have CF) tested borderline on the sweat test and I demanded a genetic test to make sure...and of course we got lucky and he is ok. When it comes to sweat tests negative results are not always accurate, however positive results are. Does CF run in your family? If so, I would make sure to have another sweat test or do genetic testing. How old is your son? If he was an infant when he was tested it could be that he just did not produce enough sweat for it to be accurate. Doctors reccomend waiting until they are 6 mos. to do a sweat test.
Good Luck and let us know how it goes.
 
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