Tuesday, February 23, 2010

All is good...

Madeline is staying well and feeling great. We go to Texas next week for her routine check-up. This will be the three month mark after stopping her cyclosporine. So far, she is still doing great. She still has her once a week methotraxate dose, but I am wondering if he will decrease this drug as well since she is responding so positively without her cyclosporine. Maybe I am getting a little ahead of myself. We shall see.

We will go by week end to have blood drawn again. We need to make sure he has all the information he needs since we only see him quarterly now. Not bad, not bad at all!!!

Monday, February 15, 2010

Interesting article

Okay - don't kill the messanger...saw this interesting article on stem cell transplantation with good outcomes. I'm not pushing for or against stem cell research, just sharing interesting facts on JDM research. :)

Successful autologous stem cell transplantation in two patients with juvenile dermatomyositis.
Posted on February 08th, 2010 in Stem Cell Therapy, Stem Cells
We report on two patients with severe progressive JDM who developed contractures and were wheelchair dependent despite therapy including methotrexate (MTX), steroids, immunoglobulins, cyclosporin A, and rituximab. On account of the refractory disease, autologous stem cell transplantation (ASCT) was performed using a CD3/CD19-depleted graft after immunoablative conditioning with fludarabine, cyclophosphamide, and anti-thymocyte globulin. This induced a dramatic improvement and sustained remission of the disease in both patients. We demonstrate that ASCT is a therapeutic option with low toxicity for patients with severe, refractory JDM.
PMID: 20132077 [PubMed - in process] (Source: Scandinavian Journal of Rheumatology)

Tuesday, February 9, 2010

Les Cochous Ont Vole'




That would mean..."Pigs have Flown"!!!! That's right...the NOLA Saints are Super Bowl Champs. I NEVER thought this day would ever happen. We are still on a high and it's going to last a few weeks. We are waking up each day asking if this is for real or a dream. Incredible!!!

I've included a few pics from our Who Dat Celebration. We went to my parents house where the party was lively and the food was great. We all screamed, jumped, cried, leap, ran around the house, etc. Fireworks were going off every where as well as a few rifles and shotguns...we are in Louisiana. HA! Strangers were hugging and horns were honking. It was a once in a lifetime experience I will forever remember.

I am so happy for our state...we needed this.

Saturday, February 6, 2010

2010 ...a WOW year!

So far, what a great year 2010 has been.We are still on a high that our beloved boys are playing in the Super Bowl. I've watched more SportCenter and ESPN programs than I ever have in my life. I think my husband loves this! Between work, church, town, state everyone can't stop talking about our Saints in the Super Bowl. As so many say around here...hell is freezing!

Other great 2010 news...and most importantly...Madeline is doing wonderful. We go to Texas for a check up in less than 30 days and I anticipate all to be good results. She has now been off the cyclosporine for over two months and we've seen no diverse reaction. Thank you!!!

All is good in the Who Dat Nation! Geaux Saints!!!

New Years Eve 2007

New Years Eve 2007
Her rash on New Year Eve 2007. We were treating at this time as poison ivy.

Madeline, January 2008

Madeline, January 2008
Here is a picture of Madeline (2008) at her classroom birthday party. Here you will notice her malar rash and grottron's papules on her hands. Of course at this time we had no idea what was going on.

Madeline, January 2009

Madeline, January 2009
Here is a picture of Madeline at her 9th birthday party. The only redness you see now is the nornal redness from running around at your birthday party. My, what a difference a year makes.