The CGD Café

Hi to all who may concerned about CGD.

My husband Kim and I have 2 sons and they both have cgd.

My eldest son is Hyun, he is 9 years  and my second son Joon is 20months old.

I 've known the old cafe and have posted some questions there.

You guys sencerely answered . thanks a lot. That was great help and support to us in Korea.

Well... Let me talk about our sons recent life with cgd.

Hyun is 3rd grade  now .His study is getting very tough and expecting it's going to be worse a lot.

(You know, Korean students are  studying really really hard.)

Hello 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. 

I was married to a man with cgd for 26 years before he died in 2001.  We were very happy because we became a good team.  Are there any wives or partners out there of people that have cgd?

Today, I have a very heavy heart.  I've read of two of our beautiful CGD family passing that I was unaware of.  I just thought I should take the time to share how fortunate I feel at this moment that my Ben is doing so well.  We can't take a day for granted!

Ben just graduated kindergarten.  Can you believe it?  A full year of public kindergarten infection free!  We've been so blessed and happy.  He's doing great now... enjoying all the things a six year old little feller is supposed to be enjoying.  I have to pry him away from the Wii a lot.  I think he would play Super Mario Brawl and those racing games all day if I'd let him.  When he's not standing in front of the tv, kicking those feet as he whoops bad guys, he loves to play soccer and throw balls on top of the house to see where they'll come down. *smiles*  He loves to play with toy dinosaurs and race cars.  He must have 1000 hot wheels that he races four at a time until a winner has been found!  And books!  He loves to read.

Okay people~ Let's get our praying and positive thoughts going for SEan Van Ness. Today I received this email from Sue.

Please contact her with your thoughts and love@ purpleloversue@yahoo.com

 Hi everyone.

Hello, I don't write in very often but i do visit the site atleast once a week.Connie it is great to read how Ben is doing. My son Domenic is turning 6 this month and also started kindergarden this year. He has been doing so good a few sores around his bum has been the only issues and a little more predisone has helped that. He has scheduled appointment  coming up this month at the  NIH his third trip check up only.I can say he is definately a very active boy as i write he is brawling with his 4 year old sister who is allready taller than him and out weighs him.We still have no luck trying to get the town to remove mulch in our local playground and his elementry school won't budge on their playground in the school yard either.He brings his own toys to school and plays in a seperate paved area and all his friends join him.  Zach and Jaxsen you guys are allways on my mind and i pray that you have a speedy smooth recovery.I'll write again soon.

Hello to my CGD family,

I thought I'd update everyone on my Ben as it's been a while.  Ben's health has been remarkably well over the last year.  He started kindergarten in a public school in the fall and I was pretty terrified at what was in store with that.  Thank God, we've been infection free so far.

Ben has also been playing soccer in the local recreational league.  We just began the spring season of it and he's so happy out there on the field.  Watching the beauty of him with the other children, laughing, running, falling, getting up... it always fills my heart to the brim.

I have a son with CGD and it has been awile since I have made a post but we are in the hospital and we came in because he was not acting like himself and come to find out he had fluid around his heart.....Yet to be detemined what the fluid is but we do know that it is not a bacterial infection?!!  He also has several lymph nodes throughout his body that are very inflamed just curious if anyone else has had these same issues with the fluid around the heart that can maybe give the docs a better idea on what to look for?  Also we are located in chicago at the University of Illinois if anyone is

has anyone wanting to have a baby investigated this institute ? please respond... 

http://www.genesisgenetics.org/pages/services.html

 The scientists and doctors at Genesis Genetics, headed by Mark Hughes, MD, PhD, performed the world's first Preimplantation Genetics Diagnosis (PGD). Since that time we have been helping couples for problems with more genes, causing more inherited illness than anyone else in the world.

I have CGD and so does my 11 year old son Jordan. We went to have HLA typing done for a bone marrow transplant 1 1/2 weeks ago. Jordan does not have any full siblings so hopefully there will be a match in the bone marrow bank. We were told at the hospital where he will have the BMT that there were eight boys that have had a bone marrow transplant 4 with unrelated donors all but one survived and are all healthy and living without cdg(praise GOD). The one that died was very sick with cgd related infictions before they even started the BMT, his chances for survival were not good to begin with.