The rest of the story...: dermatomyocitis

For those of that have been following our saga, Emma has been feeling much better since begining her steroids. She is now super strong and cute. OK, so maybe not those kind of steroids, but she is doing better.

We still do not have a diagnosis, but the treatment is helping. Last Friday, she was seen by the pediatric rheumatologist at the University of Michigan. After a thorough history and exam, the Dr. did not think that Emma has a rheumatologic disorder. She thinks that her illness is from a self limiting (temporary) bout with an infection. She has responed well to the steroids and will continue to taper them off. She has gained most of the weight back that she lost. She still has some aches and pains, but her energy has improved and her apetite is back with a vengence!

We are keeping our fingers crossed that this will in fact go away. We are cautiously optimistic. Once off the steroids, if she has problems again, we'll go back to the rheumatologist.

Thanks to all of you for the thoughts and prayers. We'll keep you updated.

Where to begin?

Since the end of January, Emmy has struggled with her health. Do you remember our heart-warming post about the stomach “bugs” that kept interrupting her slumber? The poor girl slept with a bowl for weeks!

Unfortunately, that was just the first step of a long climb. She developed several other symptoms that stumped us and her doctors. The evenings brought extreme fatigue, chills, and fevers. After school, Emma often went straight to bed to huddle under her electric blanket. Sometimes she would even fall asleep! She didn’t want to go out anymore, play the piano, or hang out with her friends. Her joints were often stiff and store, first in the knees and ankles, then in the fingers. At times, the pain would be accompanied by swelling and redness. I had to start helping her dress because the buttons and shoelaces were hard to manage. She also broke out in rashes that traveled from the apples of her cheeks to just above the jaw line.

Sores developed in her mouth, causing her a lot of discomfort. This made eating a chore. She filled up quickly or had no appetite at all. When we pushed her to take “just a few more bites”, she complained of stomach pain and nausea. She couldn’t even finish a bowl of cereal. Over the course of 2 months, she lost 12% of her body weight.

We started seeing doctors in February. Our family physician suspected a hearty virus that needed to run its course. Dissatisfied with that answer, we sought more help at the ER. Her weight loss really startled us, and we felt she needed a more thorough workup. Rick turned to a friend that he works with in the ER at St. Vincent’s, and we were able to have her blood drawn and some tests run. We were able to rule out Leukemia and the doctor discharged us with the instructions to feed her more ice cream.

Things didn’t get better. We obtained the name of a pediatrician who deals with genuinely sick kids (Dr. Mills). Rick called Dr. Mills and talked with him at length. Dr. Mills said he was happy to see her and immediately ordered more blood tests at St. Vincent’s. Once again, Emma was subjected to needles (which she hates), but was able to endure the experience by sitting on her Daddy’s lap. This new batch of tests revealed that her liver function was slightly elevated and she showed signs of non-specific inflammation. When we met with Dr. Mills, he gave a thorough examination and he spent a great deal of time getting her complete history. He suspected Emma might have an auto immune problem or something going on in the GI system. He connected us with a rheumatologist and a gastroenterologist. For good measure, Dr. Mills ordered an echocardiogram and an EKG because he was concerned about her rapid heart rate.

In just two days, the GI doc worked us in. He suspected Crohn’s or Celiac disease and scheduled an immediate colonoscopy and endoscopy. The preparation for these procedures was absolutely grueling. Emma was placed on a clear, liquid diet all day. I couldn’t let her eat anything, and it was awful. She really only tolerated popsicles since salty broth aggravated the apthous ulcers that had developed in her mouth. As if that wasn’t bad enough, she had to drink 10 oz. of Magnesium Citrate to flush out her system. With Rick working at the hospital all day, I had to be the one to administer the tortuous liquid. Over the period of 4 hours, I could only get her to drink 3 oz of the stuff. She hated me for every drop I forced on her. Fortunately, Daddy came home at 9:30 that night and worked his magic on her. She drank the potion and the desired results soon followed.

The next morning, Emma had to be off all liquids. Her little system was so depleted that we had to carry her and push her in a wheelchair. Her echo and EKG went smoothly until it was time to sit up. A wave of nausea hit her, but her empty system barely yielded anything. We were so concerned about her dehydration at this point that we hurried her to outpatient surgery so we could get her started on an IV. I was grateful that Rick was well connected at the hospital so he could push for things to move along quickly. Otherwise, we would have sat in the waiting area for hours. He informed the receptionists at the surgery check-in desk that he was going to take Emma over to the ER to start an IV. Magically they were able to get her up to pre-op right away.

Emma was understandably apprehensive about the colonoscopy, but too weak to do more than moan about it. The only real crying came when the anesthesiologist gave her Propofol in the OR. Rick got to be with her until she fell asleep, so she had no memory of being without a familiar face. The GI specialist did a thorough scope but found nothing that indicated Crohn’s. He took 22 biopsies and they all came back negative. The only thing he found was a tiny apthous ulcer in her stomach.

It was a relief to have that ordeal over, knowing that some of the scary diseases had been ruled out. Once Emma woke from surgery she drank the ice water she had begged us for just hours earlier. Rick raided the physician’s lounge and brought her an array of her favorite treats, including ice cream. With nutrients in her system, she perked up considerably. Waiting for us at home was a delicious dinner made by my loving visiting teachers. For the first time in weeks, our family of four sat down at our own table and ate a meal together. What a beautiful thing!

A week went by and tests continued to come back. Since we could rule out a lot of GI issues, we turned our focus toward rheumatologic causes for Emma’s symptoms. The pediatric rheumatologist in Ann Arbor agreed to see Emma, but couldn’t schedule us in until May. We met again with Dr. Mills and he referred us to a local immunologist with additional training in rheumatology. Dr. Mills also referred us to a cardiologist for the rapid heart rate. In addition, Dr. Mills called the specialist in Ann Arbor to push for an earlier visit. Now Emma’s appointment is in mid-April. It helps to have friends in high places, right?

The very next day we were able to meet with the immunologist, Dr. Nelson, who worked us in during her lunch hour. She believed Emma showed signs of some sort of Juvenile Arthritis and scheduled her that very evening to have an IV burst of steroids at the hospital. She wanted additional labs drawn, as well as an ultra sound of Emma’s fingers. Between the visit with Dr. Nelson and the fun waiting for us at the hospital, we went to see the cardiologist. He also examined her thoroughly and ordered a repeat echo. It was totally normal.

It was a full day of doctors, driving, and drama. Poor neglected Jacob was left in the care of our dear neighbors, who picked him up from school and fed him a good meal. We didn’t get home until almost 10:00, but we found him in the basement watching the old-school A-Team show on the big screen. I guess teenage boys have different ways of dealing with stress, right? He was concerned about Emma, and we talked with him awhile to reassure him.

The next day, we fully expected Miss Emma to sleep in, and possibly miss school. However, she was up before we were and reported that she actually felt normal! We fed her a BIG breakfast and she actually skipped down the hall to get her backpack ready. She arrived at school on time and took 4 makeup tests! Later that afternoon, we watched her sing and dance with the Junior Jazzers. Then, we took the kids out for dinner and Emma actually finished her meal! Hooray!

For the time being, Emma will continue to take oral steroids for several weeks, along with Naproxen to help with the joint pain. We still don’t have a specific diagnosis, but we’re encouraged by her rapid response to the steroids. Her turnaround is truly miraculous, and we know it is because of prayers and fasting that she is feeling better. What a blessing it is to have family and friends of faith!

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