Trip patiently waiting for his MRI to look for evidence of muscle inflammation.
After more than a year from Trip's initial onset of symptoms, months of tests and seeing specialists, we were relieved today to finally be given an official diagnosis and plan of action. Though Rex and I had known in our gut for several months that this would eventually be the diagnosis, it was comforting to finally hear our rheumatologist, Dr. Jason Dare, say, "I'm comfortable making the diagnosis of dermatomyositis with no muscle involvement" (this is often called amyopathic dermatomyositis). We're very thankful that, thus far, he has no evidence of muscle involvement, though the skin component of the disease is more difficult to treat. For now he will begin a daily dose of Plaquenil, an anti-malarial drug, to treat his skin symptoms and prevent them from worsening. Doctors aren't sure why anti-malarial drugs are effective in treating the skin symptoms associated with dermatomyositis and lupus. Plaquenil has less severe side effects than steroids, the other treatment for the disease, so we're going to try this first.
Though complications from the disease can be very difficult or even fatal for some children, Trip's prognosis looks very good. It's good that he's had symptoms for more than a year and we still haven't found any muscle involvement. That tells us that it's progressing slowly and that he may never have any muscle weakness. Here's a good link that gives a full explanation of the disease: http://www.curejm.com/info/jm.htm
If you look at that website you may wonder what symptoms Trip currently has. Right now he has the associated Gottron's papules, knee and elbow rash, neck rash, facial rash (currently it's severity is controlled with sunscreen), and mild lipoatrophy of the eyes. For photos of those symptoms click here.
Many of you know that I was concerned about Trip's sun exposure and to what degree we should protect him, as JM patients are sun-sensitive. Some patients see a worsening of symptoms from being exposed to the sun. Dr. Dare confirmed today that what we are doing now, diligent sunscreen applications & wearing hats, should be sufficient. We do need to be sure to reapply sunscreen hourly when swimming and try to avoid peek sun hours. So, we will now be sure to go to the pool and Wild River Country in the late afternoon and evening, but a Florida beach vacation isn't completely out of the question! Yea! I feared that we would be completely restricted. We'll just have to adjust the time of day that we spend outdoors.
Still groggy post MRI, but thrilled with his new HoHo (from the Ni-Hao Kai-Lan cartoon) that Rex brought him.
Having fun getting to leave in a wagon.Our prayers for Trip are this:
1. First and foremost, that the disease will quickly enter a permanent remission. That would be the absolute best outcome!
2. But in the meanwhile, that the Plaquenil will be effective with little side effects so that he doesn't have to begin a steroid treatment....
3. that he will NOT develop any further skin symptoms, particularly calcinosis which can be very onerous....
4. and that he will NOT ever have any muscle involvement.
Rex and I cannot thank you enough for all of the prayers that have already been lifted up and that will continue to be lifted up for our precious boy's sake. We believe that God can completely heal our son and in no time this disease will be just a little misstep or "trip" in this journey of life. I pray that we will never lose sight of how we have already been so very blessed and had numerous prayers answered- that we can glorify Him even through this storm.
"I am the Lord, the God of every person on the earth. Nothing is impossible for me."
Jeremiah 32:27
