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First Blog EntryHI, I have finally gotten around to posting something here. My son's name is Ashton and is 5 years old with CGD. He was doing really well until about a year ago when he had Aspergillus pneumonia. After that he was fine until March when he had an infection in the sinus behind his ear called the mastoid sinus. That was resolved, but in the past few weeks,he has had pneumonia. They haven't determined what bacteria is causing it, but he's doing very well on IV vancomycin and gentimicin. So anyways, I was wondering how to go about going to the NIH. We live in Arkansas and see doctors at the Arkansas Children's Hospital in Little Rock, but I am beginning to lose faith in them. With this pneumonia they did not want to be invasive(by doing a bronchoscopy)and immediately began antibiotics. Well, they never identified the organism and had to put in a chest tube to drain some fluid and eventually did a bronchoscopy anyways. Oh, and they sent us home on an antibiotic that didn't work, so we ended up going back a week later for another 8 or 9 days. Otherwise, Ashton is the happiest, sweetest kid you could imagine.
Submitted by Julie Johnson on Thu, 2007-06-07 02:31. Julie Johnson's blog | login or register to post comments
 So have you met Drs. Jones, Perry, and Palmer? They're good, but they mostly deal with allergies. Back when Ashton was first diagnosed in 2002, there was a Dr. Bleesing who now works at Cincinnati Children's Hospital( I think). Do you live in Arkansas? I know a lot of people drive long distances just to go there.
Julie Johnson  Just to let ya know, be careful with the gentimiacin. Too much of it can be nasty. I cant take it anymore because of kidney problems and also I know of a few kids who have gone deaf from to much of it. Don't wanna scare ya too bad but just be careful because it is a very good drug but can do some damage. And also I have always found to be aggressive with infections. You dont wanna wait around on stuff. I had a doc make me wait 2 weeks on IV for it to work, ended up having lung surgery and losing 2/3 of my right lung. A big thing is dont back down from docs. They work for you and I'm never afraid to tell them if somethin isnt working right. They are supposed to monitor gent and vanc levels to keep that kind of stuff from happening, but I'm sure it doesn't always work. That's awful about your surgery. I work in a hospital lab and we do microbiology, and it just kills me when doctors prescribe antibiotics when they don't know what organisms they're dealing with. I know that they can't really waste time with these things, but sometimes it does more harm than good. It says you're 24. That's not much younger than me. I can't imagine what it's gonna be like for my son when he's that age. Julie Johnson  Hi Julie, My name is Melissa and I have a son that has x-linked CGD and is 14 yo. We live in Arkansas (Hot Springs) and I actually work at ACH. We used to have 2 great doctors that were very familiar with CGD at ACH. One of them has now taken an administrative position and the other went to UAMS. Josh has gone to NIH since 2002 and I would really encourage you to pursue getting your child seen there. You can contact the Patient Recruitment office at 800-411-1222 and they can put you in touch with someone to see if your son qualifies. If you have any other questions please feel free to contact me directly at manicholas@sbcglobal.net. Thanks, Melissa |
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Hello Julie,
My name is Brady and I have a 9 year old that has CGD. We go to ACH also and have seen every doctor in the building i think. He was in the Hospital for 91 days straight in 2004. That was when he was diagnosed. He was never sick prior or after that stay. He just now got off steriods and they want to put him on the Gamma shots. I really don't know if that is best and now they don't have anybody that really knows about CGD at ACH. Just letting you know I kind of feel the same about ACH now.