So I have decided to blog as part of journal the happenings of Gary's condition for the doctors. The following is an email I sent to my cousin explaining what is going on:
Gary has been diagnosed with dermatomyositis. Four weeks ago Gary came down the a rash while we were outside for a few minutes. I thought he had allergies to pollen or something. So I brought him inside and called our pediatricians nurse. She said it sounded like allergies and to put him in a bath and give him benedryl. For a week I kept him on Children Clariton and Benedryl has the rash would come and go. The second week he woke up with swollen lips. Very swollen, he was not able to close his mouth. By the afternoon I noticed he had a large canker looking sore on the inside of his mouth. I took him in right away. The doctor thought it was his first exposure to the herpees virus. They put him on an anti viral medicine. Three days later he broke out into high fevers. I called and they said his test was negative for herpees and they were testing the swab for herpees zoster. I decided to stop the medicine for herpees because that is not what it was and was making him sick with diarreha. Gary's energy was dwindling. He would get spurts here and there, but no where near what a two year olds should be. He complained of constant pain, especially after baths. I called again and they said it sounded like hand foot and mouth or fifths disease. I was patient but was growing tired and worried of his lack of energy and how miserable he was. He spent most days on the couch, or laying on the stairs crying ouch ouch ouch. Thursday, May 7th, was it. I called a nurse at Childrens and talked with her for awhile. I explained why I thought it was nothing they were saying. She almost went with the "it takes awhile to do away" but agreed that all the things we thought it was didn't make sense. At the after hours clinic at Overlake Childrens the doctor didn't take very long. Gary was running a temp of 102 and had bad tummy pain. He said he had a possible Kawasaki disease. We rushed to the ER at Childrens Hospital in Seattle. The did blood work took musus and urine sample. The mucus sample was the worst out of all those. He screamed! We were able to get him to go pee pee in cup instead of having to put a catherter in. My sister came from work. We look at each other said, "wait, let us at least try." So we too him in the bathroom asked for a large cup of cold apple juice. He started drinking. I took a cup and filled it with warm water and Waahhh Laaaaa, pee pee. He is so ready for potty training. At around 2 am the blood work came back. Urine was fine, blood was fine except for some elvated liver levels. The the tests would not be back till the next day. The doctor (the only doctor Gary loved) said the other results wouldn't be back until the next day. We were admitted. They concluded that the order of his symptoms was not in the right order for Kawasaki. After 2 days as dermatologists, Rhumatologists came they all concluded it was dermatomysitis. He was treated with methotrexate (antibodies), prednisone (steriods) and few other drugs in heavy heavy doses. He will continue at home with injections of methotrexate. (Which I practiced with Saline on Grandpa today. Poor Grandpa, he is the one who pulled down his trousers and said "do me!" LOL Grandpa said I put the needle in to slow. He he he he Anyway then Gary will take inCrushed pill form: calcim vitamin D, folic Acid, Iansoprazole and prednisone. Benedryl as needed. The hardest part is going to be that Gary will gain weight especially on his face. So his apperance will change. That is sad, because he is perfect the way he is. I am hopeful he will go into remission and this will never surface again. Things we have to remember is the sun in not our friend and right now his immunity will be very low so he is susceptable to infection. He sleeps a lot right now and his energy is pretty low. The rash is looking better now so that is good. We will be frequent flyers at Childrens Hospital for awhile. Is next appointment is Monday. His next intervenious therapy in on the 22nd. They will be monitering all his functions including his eyes. Everything as far as his heart looks good. I am attaching pictures. I will keep you updated!