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New member/Joey's mom, Katy/chicagoHello everyone, I have been reading through the blogs and forums and soaking up all of the advice and info. Joey, my son who will be 2 in August. He was diagnosed with x-linked CGD at 17 months. He had a skin abscess on his left leg that would not heal--the organism was seratia marscens. Joey is being treated at children's memorial Hospital in Chicago. It has been 6 months now and joey has had no further infections. He is currently on bactrim twice a day, sporanox once a day and actimmune 3 times a week. All of the doctors that we have spoken with have told him to treat him like he is a normal kid---let him do all of the normal kid things (except to stay away from gardening). So i have been keeping to this motto---however, after reading some of the blogs i have become concerned. He has been playing in wood-chip playgrounds and going to the beach by lake michigan. I read the fungi restriction guide posted on the site. What is anyone's opinion on treating our children with CGD like other healthy children? Should i be a little more paranoid for the health of my child? Ultimately i believe my child is in God's hands but i do want to make strides to prevent infection. Another question for you....when my son was born we had his cord blood donated. After finding out that this would not be good, i was able to track it down (it was not donated, thank God) I'm trying to figure out what to do with it. Would it be worth keeping for possible gene therapy later on in life? I am 5 months pregnant with a little girl (yay!) and we plan to bank her cord blood, but what about banking his as well? Via cord has a sibling banking service free of charge for siblings with certain diseases (cgd) and they will let you bank for 5 years for free--just a little fyi. okay, my last question. We are planning to move to wisconsin in the next month or two. We are looking at a home up there that edges on a forest preserve with marsh land. Is this too risky to be near (marsh land)? Thanks so much for answering my questions. It is scary to hear about some of the illnesses that have happened with your children. If there are others out there that have had really positive experiences with treatment and overall health---please let me know. Joey seems to be doing so well---it's hard to think that any of these things could happen to him.
Submitted by Katy B. on Mon, 2008-07-07 14:42. Katy B.'s blog | login or register to post comments
 Hi my name is amanda and my son mason see Dr. Katz and Dr Shulman at Childrens Memorial.. i have been looking for someone in the area that is being seen by them and they cant give that info out so i am so glad to hear from you. I can't tell you how lucky we are to have the docs that we do. Because of so many docs that i Have been thru please call me because I live about 60 miles (which is nothing) from Childrens and I would so love to get together with you. My son Mason will be 3 in December. But I have been with CGD my whole life, I had 2 brothers pass away from complications but I know alot and we are in the city alot. everyone else that is reading this we got a GREAT doc visit 2 1/2 weeks ago and we dont go again till November YEAH!!!!!!!!!! And by then he should be off the high blood pressure meds and steroid :) ))))) very happy about that !!!! If you can't tell!!! My email address is greenjeans8480@yahoo.com. Our docs are great and I believe in them 100% please contact me we could be great support for one another...... Mason sees the kidney doc at the end of september Otherwise my number is 815-543-5887 call me at any time I only know of one other person in my area with CGD and him and I have known each other for most of our lives. take care Amanda  I believe the severity of the illness is so varied. My son was diagnosed at just over a year old. Just like your son, he had an absess on his left leg that just would not heal. His neck also had a couple on it at the time. Since our initial finding of the disease, he's had one hospital stay a little more than a year ago. It was another neck infection... healed with some heavy duty antibiotics straight to the heart. (We go to Duke here in NC by the way.) As for the mulch thing, I do my best to keep him away from it... no playing in it, etc. BUT... my husband is a landscaper. Needless to say, as our livelihood, we constantly have materials around our house. I always make sure Ben in washed well if he has had contact that I'm aware of. I am more cautious with him than the typical child, but not so much that I'm always in fear... if that makes sense. We don't do lakes and the like. I think I'd talk to my doctors in your case on the marsh thing. That sounds like a moldy, musky area that probably wouldn't be so great. But who knows, right? Welcome to the forum. I hate that you have to be here but so glad you've found it! It's been a lifesaver for me. Connie
One day at a time.... and smile. :) It wasn't clear from your posting which doctors you were speaking with. CGD is such a rare condition that you need to talk to people who specialize in it. The fact that you weren't warned about wood chips makes me think that the doctors you've been speaking with aren't up to speed. Two good places to start are below. NIH Laboratory of Clinical Infectious Diseases. Many CGD patients have consulted with people (Dr. Malech or Dr. Holland) here. http://www3.niaid.nih.gov/labs/aboutlabs/lcid/
Dr. Filopovich - Cincinnati, OH USA – Cincinnati Children's Hospital http://www.cincinnatichildrens.org/svc/alpha/c/cancer/fs/fac/lisa-filipovich.htm Thank you for the info. We have some great doctor's here at children's memorial infectious disease. They have 15 CGD kids in their practice. The majority of their patients have done very well. Take care. Katy I agree to the no wood chips. My husband and I put wood mulch around our flower beds and I ended up in the hospital with Nocardia. I would stay away as the mulch as it has a lot of different fungus. I also would not move to a marsh area for the same reason, fungus. I was not diagnosed until I was 40 so I didn't know to stay away. When I was younger, I helped clean out the damp cellar (we live in Kansas) and ended up with aspergellis and was in the hospital again for 2 months. I will go into lakes if I have no cuts or scrapes. I haven't had problem yet from that yet. I make sure to use the good old neosporin on all cuts. If your cautious he can live a relatively normal life. Karen  My son is Joey too! He is 16 years old. I say play it safe!! NO WOOD CHIPS at all. NO Lakes. I have taken my son to the beach since we live 15 miles away from it and he usually wears swimming shoes even in a pool (sometimes in the pool) He has done fine. but I have to say we make sure he doesn't get any cuts and we rush home for showers. As far as the raising your kid "Normal"..I probably am not the best one to take advice from because to me there is no such thing as normal, but I understand what you mean. We have had to pretty much not let school children know about what Joey had because Joey had a case in afterschool where kids dragged him into the woodchips, he got very sick. They didn't believe he would get sick and actually said to him "they wanted to see him die". Sorry if TMI, but I am a realist. We actually pressed charges. Sounds funny huh, but from the day we found out Joey had CGD our lives changed completely. The important thing is for you to take precaution, but don't live in too much fear. We lived in fear so bad when Joey was 6 that we became paranoid. We let our guards down a bit when he turned 10. It comes in different phases for us. When he was a youngster he would have ear infections really bad, temp over 101..then as he grew the abscesses on his body(that is how we found out he had CGD) Oh he has the auto recessive CGD. To me they are both awful. He is a teenager and now it has been a struggle to keep his face from breaking out and now at time his neck will break out in abscesses really bad. The doctors have cultured,etc and still do not know the source. Educating your child is most important. In the process we told Joey that God has a special design for his life and that is a reason why he has to be so cautious and know the Do's ands Don'ts. He doesn't give himself the shots yet..don't know if he ever will. He is on 100 mg sporanax, 1,000 mg of Cephalexin (he is allergic to an sulphar based antibiotic) 3 shots of Acctimune Interferon Gamma, Bactroban ointment Thank god he has not ever been a sports fan, so he was in Boy Scouts, but just recently decided to get out because he plays in band (Alto Sax) and he is an avid video gamer!
Hope I have not totally scared you. This support board has been awesome to me! Congrats on your pregnancy!
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Hi Katy,
Paul Gavin was having difficulty posting, but he wanted to give you this message. Perhaps it will help other CGD families as well.
Paul Gavin: Since I had trouble posting, ....I also wanted to respond to the recent posting by Katy. Her son was just diagnosed with CGD at 17 months and she is expecting a baby girl soon. Sounds similar to the situation we were in. Would you please tell her she could call Duke University (Dr. Kurtzberg) and discuss with her? They collected our daughter's umbilical cord and tested it for free. Also, they are now, as best we can tell. successful in 9 of 9 transplants of CGD patients. She could also email me if she wants more information.
I e-mailed you his e-mail.
Mary Hurley