November 27, 2009

Walgreen's finally got Addyson's prescriptions in! Dr. Jarvis has Addyson on two medications. She is taking Prednisone (4 tsp) daily and Methotrexate (0.4 ML) once a week. She seemed to me very tired today. She even went in her room and went to sleep without mommy or daddy telling her too. She didn't like the Prednisone at all. So I gave her some coke to drink afterwards. She is being a very brave little girl! She asks if she has to go back to the doctor and points to her arm where she got the IV. I have to tell her the truth. So I explain the best I can to a 3 year old that yes she has to go back so we can get rid of those red cheeks. She is so smart and mature for her age. Please keep her in your prayers that she can get off these medications quickly and go into remission.

What is Juvenile Dermatomyositis?

Juvenile dermatomyositis (JDM) is an autoimmune disease causing vasculitis that manifests itself in children; it is the pediatric counterpart of dermatomyositis. In JDM, the body's immune system attacks blood vessels throughout the body, causing inflammation called vasculitis. In the United States, the incidence rate of JDM is approximately 3 cases per million children per year, leading to 300 to 500 new cases annually and affecting an estimated 3,000 to 5,000 children.
The vasculitis caused by JDM manifests itself predominantly in two ways:
One is a distinctive rash. The rash often affects the face, eyelids, and hands, and sometimes the skin above joints, including the knuckles, knees, elbows, etc. The color of the rash is a pinkish purple, and is called heliotrope (after a flower of the same name with approximately this color). On the hands and face, the rash very closely resembles allergies, eczema, fifth disease, or other more common skin condition, but the heliotrope color is unique to the inflammatory process of JDMS. Some children develop calcinosis, which are calcium deposits under the skin. The rash is the source of the "dermato-" part of the name of the disease.
The second symptom caused by vasculitis is muscle inflammation. This symptom is the source of the "-myositis" part of the name of the disease ("myo" = muscle, "-itis" = inflammation of). Muscle Inflammation causes muscle weakness, which can cause fatigue, clumsiness, not keeping up physically with peers, and eventually inability to perform tasks like climbing stairs, lifting objects, and performing other manual tasks. Other signs may include falling, dysphonia, or dysphagia. The muscle weakness often causes a medical misdiagnosis of muscular dystrophy or other muscle disease. Some patients develop contractures, when the muscle shortens and causes joints to stay bent; exercise can prevent this. The muscles first affected tend to be proximal (i.e., neck, shoulders, back, and abdominal). About half of children with JDM also have pain in their muscles.

November 24, 2009

Today we met Dr. Jarvis! Addyson was scared the minute we walked into his office. The nurses and Dr. Jarvis are amazing. They are so good with kids! Which made Matt and I feel alot better. Dr. Jarvis came and spoke with us about the disease. He made us feel alittle better about the treatments that Addyson would be having. They took 4 viles of blood from Addyson and she had her first IV steriod treatment. She was not happy about the needles. She feel asleep during the treatment which took about an hour. She will also be on two other types of medications. The pharmacy has to order them. So she will start them as soon as we get them. Addyson over all did very well for her first of many visits. We will return to Dr. Jarvis on Dec. 7, 2009.

November 23, 2009

After reading about this disease over the weekend, Matt and I were quite upset and scared for our little girl. I joined a website called CureJM and met alot of parents that their kids had the same disease. I especcially met a lady named Kalee who lived in Oklahoma and helped me get in contact with the only doctor in Oklahoma that treats this disease. I spoke with Dr. Jarvis at Children's Hospital around 5:15pm and he recommending not having the biopsy done. He is an expert in this disease so I said I wouldn't have it done. He wanted to meet with Addyson the next morning to start getting this disease under control.

November 19, 2009

Matt and I took Addyson to the Dermatology clinic where around 20 different doctors looked at her for about an hour. Later that day I got a phone call that they all thought it was JDM. We were so scared for Addyson and knew we were in for a long road ahead of us. I told my family about what was happening and of course they were there to support us and help us out with Addyson's little brother Kyler and little sister Kaylee. The Dermatologist asked us to Bring in Addyson for a Muscle Biopsy on Tuesday, November 24. We of course said we would be there.

Novemeber 18, 2009

Addyson's journery with JDM(juvenile dermatomyositis) began today. I took Addyson to see a Dermatologist about a rash she has been having since around June. Her rash is on her face, elbows, knees, and knuckles. So the doctor walks in and in about five seconds he tells me he thinks it is JDM. He didn't go into details about exactly what this was. He just asked me to bring Addyson to a Dermatology clinic the following morning to have her seen by about 20 other doctors. I said we would be there and of course I went home and read about JDM. I was in complete shock about what I was reading. I have to admit I was in denial about her having this.