The CGD Café

I was just wondering if anyone knows the chances of me having a child with CGD. I know they are probably pretty high since I have CGD and my mom is a carrier. Me and my fiance would like to have kids some day but I really don't wanna have to put a kid through the things I've been through if I can help it. If anyone has asked a doctor about this and knows the odds please let me know. Thanks

My name is Matt Kemmerer. I am 24 yrs old and live in Fairfax, IA. I was diagnosed with X linked at 6 months old. I have recieved all of my treatment at the University of Iowa . It's been great there. I have gone through quite a bit over the years so if anyone has questions about procedures or infections I've prolly had it done so ask me anything. I have had 3 lung surgeries including a resection of my upper and middle lobes of my right lung.I have had your typical CGD infections through the years (pnuemonia's, aspergilious,solmenella) but have also had Nocardia twice. This was nasty and it resulted in surgery both times including my resection. Also a big important thing I do recieve Social Security Disability. It took me years and years of fighting through paperwork and legal junk but I went to court in June 06 and won. It's nice because I cant work full time because I would be way to tired and it helps pay bills but the big plus is medical coverage. We all know how expensive drugs are and this helps a ton. Thanks for reading and feel free to ask anything.

The conference in St. Louis is getting close.  Anyone else out there going?  This will be my first time.  I hope to meet some of you when I am there.

Vickie

HI, 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.

Hi all,

I've been poking around this site off and on, back on the old discussion boards and now this new site, but I don't think I've ever posted anything (maybe a long, long time ago?) so I'll (re)introduce myself.

My name is Anca, I'm 25, technically a CGD carrier, being treated as if I have it because of the low % of functioning cells (taking levaquin & itraconozol). No one in my immediate family has CGD or is a carrier; 
the only early death in the family had been attributed to MS (my maternal great-uncle). I also have discoid lupus, and SLE has been a question mark for a long time. I started taking plaquinil for that a few months ago and it seems to be helping with the discoid lupus. 

There's info out there about carriers developing CGD symptoms and being diagnosed with CGD.  I want to look into it more and compile a list of websites and resources.  Any input is welcome.

Hello everyone!

 I am a new member of this site.  My name is Heather.  I was diagnosised being a carrier of CGD when I was 10.  My brother passed away from it at the age of 21 months.  At the time, my parents had no idea what was causing my brother sickness.  After being in and out of the hospital, God called my brother home.  After that happen, we found out that my mother and I were carriers of CGD.  I have a younger sister, but she is not a carrier of CGD. 

I am not 24 years old and in the next year or two my husband and I are looking to have children.  I thought now would be a great time to start learning more about CGD and what my options are of having children.  While I am looking forward to having children, I am scaried of what could have to my children.  I would like any suggestions or comments any of you may have.  Maybe you could direct my to good websites, doctors, etc.  I actually saw that there is a conference in St. Louis.  I live in Missouri and thought maybe I should attend this.  Even though I don't yet have children, is this something I could and should attend?  Hope to you from any of you and thanks for listening.  Heather

Gord is 15 years old and has had many bouts of stomach trouble over the years but not for some time.  Almost 2 weeks ago he started having pain high up in the stomach area, to the point where he can't straighten up.  We let it go for a few days but when it persisted we contacted our infectious disease doctor.  He ran the usual ultrasound test and x-ray and of course blood work.  Nothing showed anything conclusive.  He then sent us down to Toronto's Hospital for Sick Children to see a GI doctor, but they don't have any experience with CGD patients and suggested that Gord go o

Hi, my name is Gloria and my 3 year old son Zander has CGD and He does get disability. It was very time consuming and getting all of his doctors on board. His CGD doctor actually wrote a letter to Social Security, so I don't know if that helped or not. If there is any thing I can help with just email me (grutledge2001@yahoo.com). I hope everything works out for you.

Hello everyone,

Just wanted to introduce myself.  My name is Scott and my 8 month old son Quentin has cgd.  He was diagnosed at around 7 weeks so I've had a little while getting used to things. After getting over his initial infection he's been doing well the past 5 months.  We're are going to be moving from Portland Oregon to the Atlanta area the beginning of April.  Wondering how large of a cgd community there is down there, and if anyone has doctors or daycare they use and are happy with that they could recommend. Thanks