The CGD Café

To chrissy and marshall, and all..

i have mouth sores come and go usually every month or so. the gumline between cheek and gums usually flares up for 3 to four days then goes away. it is painful to eat during the inflamation. in the past i have used what my doctor called a "miracle mouthwash", liquid of vibramycin, an antacid, benadryl, nystatyn, and lidocaine. It numbs your entire mouth, so eating is more tolerable. During the flare ups I will lose a couple pounds due to not eating because of the mouth sores pain. I ve also tried dexamethasone, which I have read that patients receiving chemo and radiation therapy use for mouth sore problems also. Whether either of them calm and clear up the inflamations faster i am not sure, because my sores last a few days then clear no matter what I seem to do. I do use a OTC product called Rincinol by GUM, which helps with the irritation and sore pain. Also, I use Biotene mouthwash at least twice a day. During the flare ups regular toothpaste can be more irritating to the gums, so I will use Gly-oxide (a peroxide gel) and brush more gently.  all three OTC. The combination regimen seems to help..

Hello everyone. I was just wondering if anyone's CGD child has qualified for disability in the U.S? Logan is now 8 yrs old and I've applied atleast 4 times since birth, denied all 4 times.  This past year I havent been able to work due to the 5 lung infections that he has had. It's hard making it on one income these days. I'm wondering if i need to concider getting a lawyer involved. I need some feedback if anyone has any info. for me. Bye for now.                                       Jamie

how is everyone doing?

Happy birthday to Kobe.

Hi, my son has had CGD for the past ten years, on a recent check up it was suggested to us that we consider Bone Marrow Transpalnt. As i have gotten more information the more overwhelmed i have felt. Matt has been lucky enough to have kept good health in recent years. Prior to this he had a lot of lung infections which has left them damaged.I was interested in other people's experiences had been, or what information has been helpful to them. Jill   

I'm so glad to have found a site like this, and i'm looking forward to talking to everyone! It is so great for shawn to have people who actually know what it is like to have this illness. Does anyone know of any other great sites like this? we are currently searching for alternatives to shawns current treatments. Any ideas please post !!!! THanks!!!

Marissa

The Winnipeg Free Press reported a story yesterday about an 11 year-old girl named Alida Einarson and her sister Thora, both with CGD. Thora died two years ago on her fourth birthday and small gold locket that belonged to Thora became one of Alida's most prized possessions.

Unfortunately, thieves broke into the family's house last Sunday while they were visiting relatives and stole the locket.

The family is now faced with the challenge of explaining the loss of the locket to Alida.

O.k so I am wondering if anyone is planning on attending the IDF conference in MO...I am assuming missouri...?

I didn't go last year to Orlando but wonder about going to this one. Who has gone and is it valuable to go to?

I will check out the flights and rates....where would one stay?

Thanks

Denise
Toronto Ontario

Hello. Well this is all new to me partisipating by writing on this website, I'm usually reading. To introduce myself and family--My name is Jamie Trobaugh, I have an 8 yr old son, logan with cgd and an 1 yr old son, levi without cgd. I also have two daughters,lindsey whos now 18, and Leigha whos 10 yrs old.They are both carriers. Along with my husband Tom we've all been trying to help logan fight this disease the best he can. We recently had Levi,hi brother tested for a bmt match via cord blood, but with no luck his test was only a 2/6 match, not very good odds the docs say. I havent talked with any other cgd moms,but would like too-especially any with cgd boys around logans age.

Hello everyone, I am Ryan

 I just recently became a member to the community and just wanted to introduce myself.

The site is great and easy to use.

I look forward to talking to everyone in the future.

Sincerely,

Ryan

Hey Everyone.

The holidays were eventful for us.  We had a scare with Ben right after Thanksgiving.  One night, I felt a small lump on his neck.  By the next night, it had grown to the size of a small egg in his tiny neck.  After a surgery at Duke and a month of antibiotics via a PIC line (gentamicin for a week and nafcillin for a month), he seems to have beat this one!   It turned out to be a very bad staph infection.