On September 2nd, 2010 our four-year-old daughter, Sophie, was diagnosed with juvenile dermatomyositis (JDM), an auto-immune disease that attacks her muscles and skin. I have decided to write about it. Here is why:
1. It is a practical way to update concerned friends and family on Sophie's health and treatment.
2. It is therapeutic.
3. It is not secret or shameful to have a disease.
4. Although it is rare, we are not the only family to have a child diagnosed with JDM and there is a chance that we can provide information, solace or "connection" for others by sharing our story.
5. I have found that when you share your thoughts, feelings, fears and dreams, AMAZING things unfold--and you discover that you are not alone.
You are four!!!
Make a wish.
Friday, November 5, 2010
Top Ten List
Top Ten Signs Your Child is Suffering from the Side Effects of Oral Prednisone
10. She goes to bed at night planning breakfast
9. At breakfast, she plans lunch
8. At lunch, she plans dinner
7. She breaks into impromptu songs about H & H bagels and how she likes to eat them with cream cheese
6. She can often be found sitting in her window gazing longingly at the Chirping Chicken
5. When you wipe her face to get the chocolate ice cream off she exclaims, "Hey, I was gonna eat that!"
4. You are on a first-name basis with the pizza delivery guy
3. Its not unusual to awake at 3:00 am to find every light on in the house and see her wandering about
2. Upon departure of any trip you happen to take, even just down the street to the market, "Are we there yet?" is heard and then repeated with escalating volume and intensity in two minute intervals until the mission is either completed or aborted out of complete frustration
And the #1 sign that your child is Suffering from the Side Effects of Oral Prednisone?
...You are awoken from deep slumber in the middle of the night by the doorbell to find your four-year-old in the company of the night watchman who informs you that he found her wandering the lobby in her nightgown!
As you can plainly see, the side effects of Sophie's medication have been intensely challenging. As a result, we are thrilled with this week's blood test results. Her muscle enzymes continue to look good and the Dr has given us the go-ahead to reduce her from 22.5 mg of prednisone to 18.5 mg. We are very relieved to be moving her medication in this direction. The Dr also mentioned that Sophie's glucose was a bit elevated. He thought it might be due to the prednisone or stress, but I am quite certain that it is more likely due to the econo-size box of candy dots she inhaled before the blood was drawn. Chalk it up to another prednisone success story!
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ReplyDeleteWhen I first started reading the top 10 list, i thought you were describing a typical day of vacation with the Kleins :-). So glad to hear she's improving! We knew she was a natural entertainer, but it sounds like she's really stepping up her game at night. So happy for the positive direction!! Love you all.
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