Friday, June 26, 2015

Well, JDM entered into our life again!

The last post I completed was in 2012, while celebrating Madeline's two year remission anniversary. I mentioned how I would hope in only a few years that she would remain in remission and JDM would be history forever. Unfortunately, juvenile dermatomyositis entered our lives again. Around April of 2014, Madeline went on a beach trip and experienced a sunburn. Even though her dad and I would remind, beg and plead for her to put sunblock on or wear a t-shirt to cover her, it was a battle. This battle was one I totally expected since she is a smart, beautiful, strong-willed, independent, 16 year old. I don't know if this sunburn is what triggered the JDM again, but the timing of seeing the disease creep on and off happened after this incident. When school began, the rash, specifically on her chest, was becoming more and more angry. She then mentioned to us she was beginning to see the Grotron's Papules on her hands. The heliotrope on her eyelids was present as well. Madeline is now a junior in high school and on her danceline. During the fall of 2014, her dad and I noticed that during her halftime performance she could not keep up with the high kicks. You could literally see her struggle to complete the kick during her performance. Also, they were not hitting high like the rest of the team's kicks...which is not normal for Madeline. At that point, we knew it was back. What a blow to the gut! Of course, we called our physician at Texas Children's and that is when the second blow occurred. He had retired!!! We would have to completely begin again with the referral process and physician assignment. After almost a month going back and forth with them and getting nowhere, I scheduled an appointment in New Orleans with a pediatric rheumatologist at Children's Hospital. Now we had to start a new relationship at a new place and build trust all over again. We also worried about what he would select as the cocktail or form of attack to tame the JDM. We were scared, stressed, angry and sad for our girl. In November, we had our appointment. Wasn't the same experience (comfort zone) as our other physician, but we felt comfortable with his knowledge and medication plan. Interesting how in just four years new medications have become accessible for this disease. She began her medication and within a few months her skin and strength has improved. She is not 100% yet, but on a good track. In a nutshell, we are disappointed she has to experience this process again. As parents, we are actually heartbroken. But, as a family unit we will be here for her and do whatever it takes for her to be happy, healthy and successful. I am sad and angry that she has to deal with this again...and probably for the rest of her life. But, no matter what, we are thankful her medications are responsive. She is luckier than other children suffering from this disease. But, I just wish it could be me and not her.

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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.