Shelby's JDMS Journal of Events
March 2000 to present

Week 4

Monday 3/27/00 : Shelby and mom drive to Omaha to Children's Hospital. We get checked in quickly and soon Dr. J. is there to examine Shelby. He tells us that so far, all her symptoms are pointing toward JDMS, but they want to rule out other possible causes for her symptoms. Some viruses can cause similar symptoms. They do not want to start any type of treatment until they know more. They have Shelby scheduled for chest X-rays, an MRI, more blood tests, and a muscle biopsy. Dr. J. tells us to plan on being here all week. If all the other tests come back negative for other conditions, they will begin steroid treatment for JDMS on Wednesday after the muscle biopsy. The IV treatment is a three day treatment with one dose every day. Shelby was examined by several students and also a surgeon. Shelby also gets a visit from a physical therapist and occupational therapist. They do some strength and flexibility tests with her. We're starting to feel like we've answered the same questions 100 times. Today they did chest X-rays. Shelby said it didn't hurt at all. :-) Grandma and Grandpa Baatz arrive around 12:30 today.

Tuesday 3/28/00 : Today they did the MRI. Shelby said it was very loud but nothing hurt. She got to listen to Pocahontas on the headphones. She has been very brave during all these tests. She saw the PT and OT again today for more exercises. The food has been good here so far! We've noticed Shelby talking in a slightly nasal tone. Shelby's rash is improving. Dr. P, the surgeon, explains to us how the procedure for the muscle biopsy will happen. They will take a small section of muscle from her left outside thigh. She will have one stitch and it will leave a scar that looks like a line. Tuesday night neither of us got very much sleep. We had a noisy parent sleeping in the same room with us.

Wednesday 3/29/00 : This morning at 10:30 they took Shelby to surgery for her muscle biopsy. We had a very nice nurse named Jacqueline who was with Shelby during that time (She spent all morning with us so we got to know her well). Dr. P. found me in the waiting room and said everything went great during the procedure. When Shelby came back to her room from recovery she was awake. She wanted to watch a movie but soon went back to sleep. When she woke up she told me that she didn't feel anything and her leg still didn't hurt. Dr. P. said she may experience some pain once the numbing gel wears off. By now I'm sure Shelby has a high tolerance for pain, because after all the needle sticks and IV needles, she still hasn't shed a tear. By Wednesday night she still has no pain in her incision site.  Dr J. says the muscle biopsy test will take 10 days, but after ruling out many other possibilities and based on her CPK test, he's sure its dermatomyositis. He explains in more detail what this means. This afternoon they start her on the high doses of Solu-Medrol (methylpredisolone) given by IV to treat muscle inflammation caused by JDMS. A few hours after the dose, Shelby's face turns bright red. This is a normal reaction to the medicine. There are no other side effects so far. Shelby's voice is getting more nasal. Her rash continues to improve. Our roommate tonight is much more quiet, and a very nice little girl. Shelby made a new friend today.

Thursday 3/30/00 : Grandma and Grandpa are here again! Shelby is glad to see them and has been counting down the days. Grandma will stay tonight in a hotel and come home with us to stay the entire week. Shelby has her second dose of the IV meds. Again we notice her face is flushed but otherwise seems to be feeling alright. She does seem to have more energy and endurance. The PT's notice it as well. This is encouraging. Shelby is anxious to come home. We went on a walk around the floor today, down the hall and even downstairs in the lobby. Shelby is feeling much better. Her rash is disappearing, especially on her hands, knees and thighs. Her elbows are still pretty red. Today we have another new roommate (we had to move to a different room). Another night of fairly decent sleep for Shelby, although she has the IV cart to pull around to trips to the bathroom.

Friday 3/31/00 : This morning is the last dose of the IV meds. Shelby's dad arrives late in the morning. Mom and Grandma head home to prepare for attempt #2 at a moving sale. Dad and Shelby met another girl, age 13, with JDMS. Her symptoms seem to be more serious than Shelby's. Her parents said that they went to 9 different doctors before their daughter was finally diagnosed with JDMS. We feel fortunate - our local doctors knew what to do in finding a pediatrics specialist, and she knew who to call regarding JDMS. We feel that we are in good hands here. Shelby's discharged with orders to start PT/OT 3x per week. We will be back in two weeks for a check up and to have the leg stitches removed. Shelby will be taking oral Prednisone as well as calcium and Vitamin D supplements.

Saturday 4/1/00 : Moving day. Thank goodness for Grandma's and friends. We are truly blessed to have a caring family and friends who will help with even the most undesirable tasks. We try to sell some more "stuff" before moving it to the new house. My girlfriend brings us a yummy lunch which everyone enjoys. In the midst of all the commotion this afternoon, I forgot to pick up Shelby's prescription. I hope one day without the prednisone won't make a huge difference. Shelby struggles up the 4 steps in our new house, but makes it. Grandma occupies the kids while Mom, Dad, and 2 very loyal friends move most of our things to the new house. Shelby took a little nap today during the afternoon. She went to bed early (around 8) We got the kids' beds set up, as well as ours.  Grandma slept in our bed and stayed with the kids. Mom and Dad spent a night at some friend's, first to relax in the hot tub and then for a good night's sleep.

Sunday 4/2/00 : We picked up the prescription meds this morning and gave Shelby the oral dose. The calcium pills won't be in until Monday. We clean the old house this morning, and try to unpack this afternoon. We're all a little tired and cranky. We're feeling sore muscles where we didn't know we had them. Shelby seems a little tired, but she made it all day without a nap. She avoids the steps if at all possible but can usually get up them without help. She managed to get in the bathtub OK tonight, but I had to lift her out. She went to bed pretty early again around 8.

Monday 4/3/00 : Shelby is going to attend school 1/2 days this week. We give her the medicine in the morning with her breakfast. The school personnel are very willing to do anything to help Shelby be comfortable in school. Her voice is still very nasal. She still has trouble with steps, so they will use the wheelchair lift to get her up the steps for now. She can go down them on her own. Her classmates are glad to see her back in school - they missed her last week. Shelby wants to eat lunch at school, so I pick her up at 12:20 after lunch. She had a good day and has some homework to do later. She told Grandma that the other kids got to go see a play this afternoon but she didn't get to go. But then she said "...but that's alright. I'm here and I'm okay". Out of the mouths of babes. Shelby has a desk in her room now, so she buckles down right away and gets most of her homework done. We get the calcium pills today. They are huge and hard as a rock. We use a pill cutter and grinder to make them into powder. How do they expect kids to swallow these things? I don't think I could even swallow them.   Shelby has PT at 3:00 today. The worked with her for an hour. She was pretty tired when she got done but she said she liked it (she likes the therapist, too). Shelby's rash is getting a little bit worse on her hands again. 2x per day on the creme. We forgot this morning. No nap again today, but bedtime around 8:30.

Tuesday 4/4/00 :  Medicine, skin cream, school this morning. Still feeling pretty good, and we're noticing an appetite increase. Shelby will probably find those 5 pounds she lost last week, and maybe more. We will continue to be careful about what we buy for snacks for her. She loves fresh fruit and veggies. Maybe Mom and Dad will lose a few pounds in the process? Brother Sheridan is doing fine. He's got soccer practice tonight and loves it. Shelby was going to try soccer this year, maybe next year she'll be able to play.  Sheridan has been helpful in helping Shelby with seat belts and door handles. We haven't explained to him in depth what is going on yet. I did tell him that Shelby's muscles weren't working real good right now so she might need some help from all of us. He's very willing to do that much, but was a little jealous about all the goodies she was given while she was in the hospital. Grandma plans to take him to Wal-Mart to get some of his own goodies. Shelby's sweet personality is shining through more now that she's home and feeling better. In fact, she's become a giggle-box. Laughter is wonderful medicine, for all of us.

Wednesday 4/5/00 : We're slipping into our routine, but the only problem is that the routine won't include Grandma after this week. It's going to be quite an adjustment to lose her extra pair of experienced hands around the house. She's been helpful in cleaning the new house, unboxing and putting away things, grocery shopping, cooking, and painting. Again, I wonder what it would have been like to have no help?! And for Shelby, Grandma's presence has been priceless. Shelby has PT again today. I think she looks forward to it and enjoys it, for that I am thankful. After PT she is pretty tired and struggles with the steps. She laid on her bed and rested for awhile late this afternoon. Tomorrow my sisters taking the 5 1/2 hour road trip down here to paint the inside of our new house. Aren't sisters a treasure? They are anxious to see the kids as well. We are looking forward to having them here.

Thursday 4/6/00 : More of the same this morning. Shelby has been feeling pretty good in the mornings and looks forward to school. Her classmates continue to be supportive of her, waiting for her to get up the steps in the lift. She hasn't been going out for recess or to PE class this week. Dr. J. said to hold off on that until after her check up. We'll have to apply sunscreen to her skin, too, as the medication makes her sensitive to sunlight. Grandma picked Shelby up from school today. When I got home from work, my sisters were there. Shelby seems to be slowing down a bit. I'm glad we only have her at school half time. We might have to consider doing that next week, too. Her attitude is still great. Her voice is returning back to normal. The nasal quality is getting a lot less noticeable. She hasn't griped too much about taking the medicine. I suppose it will just become normal after awhile. 

Friday 4/7/99 : Shelby is tired this morning, and it shows on her face. I considered keeping her home today but she said she wanted to go to school. I hope she will nap this afternoon when we get home at 12:30. I still marvel at how well she is adjusting to all of these changes in her life. She is still fairly independent, but does need help with certain tasks. She had PT today and she was pretty tired, just after 1/2 hour. The kids went out for pizza with Grandma, though, so she perked up enough for that! The rash on her hands isn't improving any more, in fact, new scabs are showing up on several fingers. I don't think the cream works on her hands, maybe because of handwashing? I will think to ask the doctor about that. Also I'm wondering about applying sunscreen. Does that have to be applied before or after the cream? Bedtime around 9 tonight.

Saturday 4/8/00 : We all had a big day today. My sisters and I did a lot of painting, and Shelby helped out a lot. She was our "runner", making sure we had clean up rags, screwdrivers, or whatever else we needed during the day. She even got to paint a little bit herself, which she seemed to enjoy more than the rest of us. Shelby found her new favorite chore...using the "Swifter". She's designated that as her job and loves to push it around to clean the floors. We stretched her muscles before bed, she was a little stiff but seemed to feel good overall.

Sunday 4/9/00 : Today Shelby lounged around for quite awhile in the morning. Then it was time to say goodbye to Grandma and 2 Aunties. It was sure nice to have them here to help out, 6 extra pair of hands go a long way. Shelby's appetite was really strong today. She's hungry just an hour or so after eating a meal. For lunch she ate 1/2 chix salad sandwhich, a salad, 1/2 banana, 2 helpings of mashed potatoes and a glass of milk. Then we went to her brother's first soccer game, and within 1/2 hour of that starting, she was hungry already. She's craving salt, she wanted Cheetos. It's hard to explain to her why she can't have this stuff. I don't want her to start being weight conscious at age 8, I've heard too many horror stories about kids with eating disorders. She's put on a bit of weight through the middle already, so we'll have to be careful to keep up with the nutritious meals and snacks. We buy almost everything low-fat already, so that part won't be real hard. But we all like tortilla chips so that will be a hard habit to break. Even the low-fat chips aren't going to work...they are too salty. I suppose low-fat saltines would be an alternative. We were at the store today trying on shoes and Shelby had a little "spill". It was my fault, I felt horrible. She was standing up and I went to lift her foot off the ground to get her shoe off. She lost her balance and down she went. I need to get it through my head that her muscles can't react as fast as mine, and once she loses her balance she can't get it back like normal. I noticed some white spots on Shelby's inside lower lip today. She also has a little sore in the corner of her mouth.

Monday 4/10/00 : Shelby was a little upset at first this morning, when we told her we'd try a whole day at school. I think she was diggin' the 1/2 day thing. I'll pick her up after school so she doesn't have to struggle with the big bus steps. I'm afraid she might fall getting out. We are still crushing her calcium pills and even the prednisone. We mix it all together and give it to her in spooonfuls with liquids. It seems to be working fine. There is no way she'll be able to swallow the calcium pills.

Diagnosis notes from the MRI:

MRI Upper and Lower Extremities 03/28/00

Inversion recovery images of the upper and lower extremities were obtained in the axial and coronal planes as a screening test for myositis.

Interpretation: There is abnormally increased signal intensity throughout essentially all major muscle groups in both upper and lower extremities including the muscles of the pelvis. Findings are consistent with a diffuse myositis.

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Page created 04/06/2000 last updated 06/19/2001.