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Bronchoscopy I am wondering if any of you or any of your children have had a bronchoscopy and if they were able to get results from it. Our son who is 15 months old was premature and all along they have pretty much assumed that his "bad" x-rays were a result of being born 3 months early. Last August, they did try 6 weeks of IV Gent/Clinda to see if it would clear his lungs up, but they didn't. His most recent x-ray is even worse, "very cloudy". He is acting fine, no fevers, and his labs slightly elevated (which is usually the case). His doc wants to do a bronchoscopy, but says that they probably won't find anything conclusive because he has CGD. I guess I am wondering why they would put him through it if that is the case. Have any of you actually had "conclusive" results from a bronch? Thanks, Trisha
Submitted by Trisha on Thu, 2007-03-15 18:59. categories [ General Discussion ]
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 Hi Trisha! My son, Sean, had a bronchoscopy (as well as a CT guided needle biopsy) in December. Both grew the same bacteria, cepacia. They did both because the doctors feel that the bronchoscopy is not a sterile a procedure, but the results turned out the the same. When Sean had the procedures done, they gave him meds (one being Versed which is a wonderful thing--is an amnesiac as well as makes you sleepy) so he didn't remember a thing and was very comfortable after. He said he wanted to do it again! I also want to mention that Sean's doctors told me not to be too concerned with the x-rays for a while. Apparently, they can look worse before they look better and the patient may actually be getting better before the x-rays show that. (Sean was VERY sick in December and was found to have Burkholderia Cepacia.) So be prepared for the films to show little to no improvement and also the possibility of them looking worse for a while. I hope this helps you. My thoughts are with you! Sue Van Ness My daughter has had three bronchoscopies. We did not know that she had CGD at the time. They never really where able to put a finger on anything exact but she did get very sick every time they did one. It was like it stirred up whatever was in the lungs and she would run a very very high fever for a few days afterwards. She had one at the hospital here at home and two of them at the Rochester Mayo Clinic. She says the ones at Rochester were easier on her. Those she doesn't remember much about them. The one at home - she remembers - not a good thing!!! Good luck to you. It is so hard to know what is the right thing to do for our sick children.
 Hi Trisha, I surely understand your worries. I had a bronchoscopy twice in the last 10 years. Both times it pointed out nothing, while on the x-ray something showed. But I still think you have to take every possibility wich can give a diagnose. Dispite the fact that here in the Netherlands the adult patiënt isn't put to sleep. That makes the examination very carrying. I'm sure kids are put to sleep for this exam. Trisha, I wish you and your son (I can't find his name?) all the best. greetings, Grégor
Live your life, it's worth it!  Trisha, When I had pneumonia, they first saw something on the Xray, used a CTscan to confirm it was pnuemonia, but couldn't grow anything from blood cultures to see what was causing it. After a bronchoscopy, only one of the 8 dishes grew what I had. We didn't know I had CGD at the time, so the doctors thought maybe it grew out of lab contamination because people with healthy immune systems don't get cepacia. It is possible for them to grow something, and knowing he has CGD, they have a better idea of what to look for. It isn't very invasive, which is why it is a first step to try. They numb your throat and put you to sleep and you don't have any pain from it afterward. Hope this helps, and I hope they figure this out! Gina Gina, Thank you for responding. It gives us some hope that maybe we won't be putting our baby through this for nothing. Our docs day it's a "standard procedure," but it's scary when they'll be doing it on our little 17 pounder! Although it would be wonderful to get some answers. I hope all is well with you. Thanks again for sharing your experience. Trisha  Trisha,
Just checking in to see how the procedure went and how your little one is doing. Our son also had a bronchoscopy.
In appreciation of each and every healthy day, Marty Cowan
(Clayton's Mommy)
Hi Marty. Thanks for checking on Caleb. His bronchoscopy was put off about a month because his liver enzymes started climbing again. He has been unable to tolerate Actimmune and Itraconazole because of his "sensitive" liver, but he hasn't been on either of them since December. His liver enzymes started getting pretty high recently (over 700) so they recently took him of Bactrim to see if his liver would recover. This week his levels were mid 100's, so it looks like he is also sensitive to that med. This has been so frustrating since we know how important these meds are for him. He had his bronch 2 weeks ago and so far all the cultures have been negative. He had to be on a ventilator for about 2 hours, but we were able to bring him home that night. His x-rays are still pretty nasty looking, so the doctors are back to blaming his lung issues on his prematurity. I'm thinking about getting another opinion about all this. Hope little Clayton is doing well, Trisha |
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I have had several bronch's done over the years.Probably 15 to 20. I have always had luck with them when a biopsy is done. The Lavage or wash as they call it never has worked for me. I have had a few instances were I've had a bronch and gotten to feel worse afterwards for a few days because they went down there and stirred things up.