Thursday, October 29, 2009

Punk Rock Girl

We are ready for Halloween. Madeline (after changing her mind around 10 times) finally decided she is going to be a punk rock girl. Wasn't real sure what she was thinking, but once we bought everything and she tried her outfit on I realized she's not a punk rock girl but an 80s girl. She is wearing almost everything I did in 7th and 8th grade...kind of an Madonna look when she first started out with Lucky Star. Too funny.

We are planning our annual Halloween get together so the house will be packed. Speaking of house packed...we have new live-ins - my in-laws. We moved them in this past week while their new home is being built. Plan is they will be out before Christmas. Thanks goodness I love these people.

Thursday, October 22, 2009

Journal of Pediatrics on JDM

I'm always interested on any study conducted on JDM. Found this one which would include Madeline in the mix since she never took corticosteroids. Interesting...

Favorable Outcome of Juvenile Dermatomyositis Treated without Systemic Corticosteroids
Deborah M. Levy, MD, MSa, C. April Bingham, MDb, Philip J. Kahn, MDc, Andrew H. Eichenfield, MDa, Lisa F. Imundo, MDa
Received 2 March 2009; received in revised form 6 August 2009; accepted 2 September 2009. published online 21 October 2009. Corrected Proof

To describe the course of patients with juvenile dermatomyositis (JDM) treated effectively without systemic corticosteroids.
Study design
A retrospective study of 38 patients with JDM treated at a tertiary care children's hospital identified 8 patients who had never received corticosteroids. Disease presentation and course, pharmacologic, and ancillary treatments were recorded.
Patients in the no corticosteroid group were followed for a median of 2.8 years (range, 2.1 to 9.5 years). Treatment was primarily with intravenous immunoglobulin (IVIG) (75%) and methotrexate (50%), with favorable response in all. No serious treatment complications were observed; headaches were reported by 3 patients receiving IVIG. Two patients had a myositis flare after discontinuing all medications for more than 1 year; complete resolution of symptoms was observed after either 1 or 2 further doses of IVIG. Two patients had calcinosis (at 1 and 9 years of disease); however, no patient had joint contractures, muscle atrophy, lipodystrophy, or functional limitations.
Systemic corticosteroids can be avoided in a select group of patients with JDM. Alternative agents such as methotrexate and IVIG may be prescribed to effectively treat JDM and prevent complications.
ALT, Alanine aminotransferase, ANA, Antinuclear antibodies, AST, Aspartate aminotransferase, BMI, Body mass index, CMAS, Childhood Myositis Assessment Scale, CPK, Creatine phosphokinase, CUMC, Columbia University Medical Center, DsDNA, Double-stranded DNA, ENA, Extractable nuclear antigens, IVIG, Intravenous immunoglobulin, JDM, Juvenile dermatomyositis, LDH, Lactose dehydrogenase, MMT, Manual muscle testing, MTX, Methotrexate
a Department of Pediatrics, Morgan Stanley Children's Hospital of New York-Presbyterian, Columbia University Medical Center, New York, NY
b Department of Pediatrics, Milton S. Hershey Medical Center, Penn State College of Medicine, College Station, PA
c Department of Pediatrics, New York University School of Medicine, New York, NY

Sunday, October 18, 2009

Fall has finally arrived

After a week of 90 degree temperature, along with humidity of 100 percent, the cool air has finally arrived to Louisiana. It's a beautiful weekend with temps in the 60s-70s. Madeline is enjoying the day by playing outside and riding her bike with friends. Love it!

Madeline's decrease of meds is still on course. I've not seen one effect due to the decrease. I don't want to jinx us, but I really think she has beat this stuff. It has been a year and seven months...I think that's long enough. Oh - I hope we're this lucky.

Wednesday, October 14, 2009

2009 5th grade school picture

This is the official photo of Madeline's 5th grade school year. My, my...she looks way older than 10 years old. But, she is beautiful and looks, feels wonderful. God is good!

Friday, October 9, 2009

Geaux Tigers!!!

We are heading out today for the LSU/Florida game. We are so excited! Everyone tells us it's nuts in Baton Rouge already. We plan on dressing the kids up and bringing them to ESPN Gameday. Hopefully, we'll get on for us!!!

Geaux Tigers!!!

Monday, October 5, 2009

Madeline's weekend

We had a nice weekend. Our son Trey went out of town for a birthday party so we had Madeline all to ourselves. We let her select what to do so off we went to Copeland's and then the Halloween store. We had fun except for the part that the Halloween costumes all looked like stripper attire. We decided we could find a better costume somewhere else and pushed her out of the door quickly.

Madeline went to a cheer camp at a local school Saturday morning and had a great time. She was as tall and talented as most of the cheerleaders there. But I guess I am biased. :) After, we watched a very incredible, yet nerve wrecking LSU/Georgia football game. Our Tigers WON!!!!!!

Great, calm weekend. It rained, was relaxing and enjoyable. We needed this simple time. Oh- her Texas doc appointment can't happen until early November. No big deal though for all is good.

Thursday, October 1, 2009

All is good

Madeline continues to do well. I was so concerned that she would return to school and be out again with another illness. Luckily, this has not been an issue.

We are calling today to schedule her check-up w/ Dr. W in Texas. This is the longest (3 months) we've gone without going for a check-up. This was because he wanted to give her a chance with the decrease of cyclosporine. He wanted to see if we experience any changes or flares w/ her JDM due to the decrease. So far - we see nothing.

I know it's way too soon to get too excited, but at least it's good news for now. I believe he is going to be very pleased with her results. And of course, I then wonder when we will be able to decrease other drugs and be on our way to the big R...remission!

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.