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Saturday, May 8
Julia got another Methotrexate dose today (and no folic acid-containing multivitamin), and her Prednisone dose was reduced to 32mg.
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Sunday, May 9
Happy Mother's Day. There were no updates this past week because we were on vacation at Walt Disney World in Orlando, Florida. We had a great time, and had a lot of fun, as we got to see the brand-spanking-new Animal Kingdom. Julia is big enough to ride all the rides, including Space Mountain, Splash Mountain, Thunder Mountain, and the Tower of Terror.
Julia tolerated the hot weather (highs 80-90 every day) very well. She showed a lot of stamina; however, she was very well motivated. In general, she got a bit less sleep than normal (8-9 hours a night instead of the usual 9-10 at home). We were extremely concientious about using sunscreen - we applied SPF 30 or greater at least twice a day, and our efforts paid off. Julia got practically no sunburn, just a slight tinge of redness on her shoulders after a day at Typhoon Lagoon, which was gone a day later. We were pleased.
Julia's rash is looking remarkably better on average these days. We only got a couple of comments, early in the week, from Disney 'cast members' about Julia "getting a little sun". Her elbows & knees are looking almost normal, and her hands are improved. Much of this improvement has occurred in the weeks since we began Methotrexate therapy, and although it's not supposed to have an effect on the rash, and the Plaquenil isn't supposed to be working yet, she is looking better.
Finally, on the medical front, Julia has gained a couple of pounds over the past 2 weeks. Between the vacation and the process of moving to a new house in a few days (and the packing and other preparation involved), we have been eating on the run a lot lately. We have another appointment at Children's Hospital in a couple of weeks; we will try hard to keep her from gaining any more. This is really our fault, we just have not been very vigilant with our diet.
I have a couple of gratuitous Disney links here, just becuase I like them: The Trash Cans of Disney, DisneyFan, The Geeks' Guide to Disney, and Hidden Mickeys.
Tuesday, May 19
Julia's Prednisone dose was reduced to 28mg today. She is doing much better with the reduced doses. Her appetite is returning to normal - we ate out, she ordered a hot dog but only ate half of it. She hasn't done that since before Prednisone.
Julia's rash continues to look pretty good. Her eyelids still have a distinct pink tinge to them, but the rest of her face is looking much better, just a few small reddish blotches here and there.
Julia has been needing significantly less sleep lately as well. Starting a few days before our Disney vacation, she's been averaging only 8-9 hours of sleep a night, and she's been doing very well with that. No tiredness, and only a bit of crankiness well after her regular bedtime (of 8:00). We're probably going to let her stay up later beginning after school gets out in about a month, and change her bedtime from 8:00 to 8:30, at least for the summer.
Julia's weight continues to be a problem. On our bathroom scale (of admittedly unknown accuracy), Julia weight is up to 67 pounds. She is looking rather chubby these days, especially her face. We moved into a new house last week, and we've been eating out too much lately.
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Saturday, May 23
Julia's energy level has been fantastic lately. Her regular bedtime comes, and she is wide awake, and she reads in bed for a while until she gets sleepy. We've already changed her bedtime to 8:30 on non-school nights, and she's doing fine. We did have to talk to her about complaining and whining at bedtime when she's not tired, but we agreed to the later bedtime if her attitude improved. It already has.
Monday, May 25
A few words about hair today. Julia is starting to show some hair on her body that wouldn't be there except for Prednisone. She is starting to get some wispy hairs on her upper forehead, and already has a significant amount of hair on her back. It's affecting other parts of her body, too. I plan to ask about this at her checkup later this week, but I have read that some extraneous hair growth is a common side effect of Prednisone.
We went for a brief walk today, and Julia wanted to ride her bike a bit. Going uphill, she struggled a little, but I think it's mostly due to poor technique than muscle strength. Her strength really seems to be completely normal.
Wednesday, May 27
Time for another trip to Children's Hospital for a checkup today. Traffic driving into Boston was worse than usual; the biggest slowdown was due to a traffic accident outside the city. It took us almost an hour and a half door-to-door, and it usually takes less than an hour.
Weight is more of a problem than we expected. She weighed in at 69.6 lb (31.6 kg), and a height of 122.5 cm (48.25"), versus 62.4 lbs (28.3 kg) and a height of 122 cm (48") last time, a month ago. Ouch. Well, the explanation is between Disney World and moving, we all have just not been eating well lately. Dr. S. didn't say anything about her weight, but he really didn't have to.
Julia's blood pressure is about the same as last time, 125/69 (versus 120/74). This is good, and indicates that tapering the Prednisone is probably preventing any further elevation in blood pressure.
First, as usual, Julia saw Dr. A.W. We had a parade of doctors coming in to look at Julia, just like always. She rolls her eyes, but I think she loves the attention :). Today, we had a Dr. C. visiting from Brazil. I asked him, and he'd never seen a case of JDMS before. He sat in on the initial exam with Dr. A.W. She just asked her and us how Julia is doing, and did some simple strength tests. We also asked her to apply the EMLA to just Julia's right arm. That worked out well.
After a bit of a wait during which Julia and I played 20 questions, Dr. S. came back with a small crowd of doctors, including Dr. C., Dr. B.W. (the rheumatology resident who saw Julia on 3/25), and 2 other doctors whose names I didn't get. Dr. A.W. and Dr. S. were both very pleased by Julia's continued progress. Her strength by every test they performed was completely normal. We asked about the hair growth, and he said that this is a common side effect of the Prednisone, and the new hair will fall out as the drug dose is lowered further. We commented how Julia's rash has been noticibly better evern since we started on Methotrexate, and he said that it is not common, but it can have a positive effect on the rash is some cases. We appear to be one of those cases.
Dr S. was using some terms while describing some of Julia's symptoms I hadn't heard him use before. He describied the rash as "vasculitic". He also used the term "torturosity" to describe the capillaries visible under her fingernails. I had to ask about that one, he said it means curviness, that the blood vessels are visibly more curvy than normal.
We are going to continue to taper the Prednisone dose at the current schedule of a 4mg/day reduction every 10 days. She's at 28mg now, going to 24mg on Friday, and so on. She'll be down to 16mg by the next checkup! Julia was complaining about swallowing the 20mg tablets, they are the biggest ones she has to take. Dr A.W. prescribed a supply of 10mg tablets, which should be easier for Julia to swallow.
Finally, we took Julia for blood tests. The phlebotomy staff at Children's is just the best. They really know what they're doing, and are great with the kids. Julia cried, mostly in anticipation, but in reality removing the EMLA bandage was the worst part. The actual blood drawing was completely painless. Julia literally didn't know when the needle went in. I now have the results from these tests.
Friday, May 29
Julia's Prednisone dose got lowered to 24mg today.
We got a voice message from Dr. A.W. Friday night (we were out). She said that some of Julia's numbers were up, and we should call for more information. Unfortunately, Dr. A.W. is leaving Saturday for a 2 week vacation, so she said to call in the morning and page the rheumatologist on call, Dr. H. Dr. A.W. said in her message that she would fill Dr. H. in on the details of what we need to do. This lack of information obviously made for a less than fully restful night.
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Saturday, May 30
We first reached Dr. H. at home and she said that Julia's CK and LDH numbers were elevated, and that we should increase her Methotrexate to 20mg (up from 15mg), or a 0.8ml dose. She did not have the numbers in front of her, so she promised to call back when she got to the hospital. We had been holding off on giving Julia her medication until we spoke to the doctor, so we now gave her them -- 24mg Prednisone, 200mg Plaquenil, and 20mg Methotrexate (and no multivitamin today).
Dr. H. called back in about an hour, and said that Julia's CK is up to 60 (up from 27 last month) and her LDH was up to 398 (up from 310 last month). She really did not have any more detail to give us, and suggested we call Dr. S. on Monday morning. To me, these numbers certainly aren't alarming, but neither are they reassuring.
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