End of 2006 Update

Gracey started this months round of IV's yesterday afternoon. Here's the schedule:

• Day 1 - Wednesday, 2006-12-27: Solumedrol starting about 4:50pm, ending about 6:30pm
• Day 2 - Thursday, 2006-12-28: IVIG beginning about 9am, ending about 4pm then solumedrol beginning immediately after IVIG then ending about 1.5hrs later
• Day 3 - Friday, 2006-12-29: IVIG beginning about 9am, ending about 4pm then solumedrol beginning immediately after IVIG then ending about 1.5hrs later

Terri was the nurse for this round and was able to start the IV in two tries. First effort was on the left wrist and the needle apparently passed through the vein. Second attempt was on the right wrist and was successful. The first day went well. No complications or side-effects were noted.

Before started this pulsing Gracey's rash was slightly pinked - a little more so than the previous weeks. This slight increase in rash was seen within only 2 to 3 days preceeding the pulsing. No muscle weakness has been seen. Gracey appears strong and says she feels very good. She has complained in the past three weeks of occassional "growing pains" as she puts it, generally in her upper right leg. These pains have lasted anywhere from less than an hour to most of a day. I will keep better notes on this subject but in the last three weeks I remember her complaining of the pain about 3 times.

Also important to note - on Christmas day we measured her on her growth scale in her room. She had grown about 1/4" since July 2006. We've measured in the previous months but no growth was noted. I'm guessing as the solumedrol is spaced out (doses are delivered farther apart in time) her growth will start to return.

Update -- IV's completed...

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OK... the last couple days of IV's are complete. All went well with

virtually no side-effects. On the last day (IVIG & solumedrol) Gracey started having a low-grade temp of approx. 99.1 but this is typical on IVIG days. We stayed on a 4 hour schedule throughout each night following IVIG and alternated between Children's Advil and Children's Tylenol to make sure she didn't develop a high temp or head-ache. Gracey loves the Advil (blueberry flavor) but despises the way the Tylenol tastes (I think it's bubble gum flavored).

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As the three-day IV pulsing progressed her facial rash seemed to me to become slightly sharper in definition with more distinct areas of rash. This rash, however, is not a smooth distribution of reds and purple but more specific to the typical JDM rash regions. Her fingers, elbows and knees don't seem to have any rash outbreaks this round. We'll be watching closely and will note any changes. I'm expecting this little flair in facial rash to dim over the next few days beginning about 2 to 3 days after the IV pulsing ended - so starting December 31 (Sunday) or January 1 (Monday) changes should begin to occur.

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Gracey's attitude for this IV pulsing was very good. She definitely was tired after day two (the first IVIG day). Day 2 and 3 start around 8:30am and lasted until about 5:30pm. That's a lot of hours for a little girl to be hooked to a machine! So her dulled moods on day 2 and three are expected. As soon as the IV tube was unhooked she was up and after a few minutes was smiling and bouncing around.

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I bought her some headphones to help when watching movies. While the IV's going and a movie is playing she can't always hear the movie because Mom and the nurse will talk. At first she loved the headphones but didn't use them on days 2 and 3. I think she gets so bored during the IV's that movies are't as good a distraction as listening to conversations in the room.

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Finally I wanted to include a link to a page describing the physical test Gracey undergoes during each visit to the rheumatologist called CMAS. This is the way the doctor guages muscle strength. Here is the link: http://www.rheumatology.org/sections/pediatric/cmas.pdf.