The CGD Café

Hello All,  Domenic has been having his ups and downs with a long lasting pnuemonia that seems to just hang on. On the bright side Make A Wish Foundation has granted Domenic his wish and they will be installing a beautiful playground in our backyard for him. ( pirate theme)This is so exciting for him his own special playground he picked out we are all looking forward to the start of constrution.

Also if there are any local CGD families in the Boston area we would like to communicate with you I'm sure we must share some of the same doctors. Or anyone else for that matter.

Well I hope everyone is doing good and bless you guys all having BMT's good luck your in my prayers.

I wanted to know with CGD carriers with lupus like symptoms.  And how Rheumatologists react with negative ANA and Anti Ds DNA antibodies.  I would like to know skewing of functional white blood cells.  Any one experienced with it.

I wanted to know with CGD carriers with lupus like symptoms.  And how Rheumatologists react with negative ANA and Anti Ds DNA antibodies.  I would like to know skewing of functional white blood cells.  Any one experienced with it.

Hello CGD families,

I started a blog for Jaden to chronicle our journey from CGD diagnosis through his cure (he will be getting his cord blood transplant on July 9th at Duke):

 http://jadendhaliwal.blogspot.com/

I would love to share information and provide support for other families in the same situation. Fell free to visit our blog and post comments. Please keep Jaden in your prayers as we leave for Duke on June 12!

 So excited but anxious as well. Pray all goes well and we come back home cured of CGD!

 Kiron

Hi everybody.  I have not posted or read anything for some time.  My son Gord is now 18 years old and doing very well.  We have recently been in contact with  the NIH and they have offered a clinical trial for us to participate in.  Has anyone had much experience with this situation?  Gord is planning on attending University in the fall and we were wondering how disruptive vs. helpful this might be?  Thanks for any input.  Kathy W.  

Hi. It's been a long time since I've posted but I have been having some problems in life (lost my job of 10 years and can't find another one with health insurance) and would appreciate any inpuit from any of you who have had to file for Social Security Disability benefits. I am looking to file for disabilty since I have not been in wonderful health for at least 5 years and can't find another job that can offer me medical insurance and I don't think I'll be able to find a job where they will be okay with me being gone as much as I tend to be either.

 I welcome any help or advice you may have.

Hello  All

    The Nih is starting a remicade protocol for 25 patients with Cgd that have IBD symptoms. We are considering this due to Domenic's constant battle with his bowels. In the past we did go through 2 rounds of remicade but Domenic picked up an infection so we had to stop, but I think its time to try again.Has anyone else been contacted please respond.

Thank You

Mark 

I am pasting a message from Dawn Adams regarding Jax, one of her sons who went through the BMT a year ago.  The 2 boys just had checkups within the past week and then Jax starting seizing at dinner.  Please reach out to show support and keep Jax and the family in your thoughts and prayers!

~Sue Van Ness

http://www.caringbridge.org/visit/zachandjaxsen