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Wednesday, September 1

Julia went in to Children's Hospital for Yet Another InfusionTM (Solu-Medrol 1000mg). Her favorite nurse did the infusion, and it went without incident.

Dr. A.W. came by today and had a nice chat with Julia and her mom. She refilled a couple of prescriptions we needed. They also talked about the discoloration on Julia's hands - they look a lot like what happened to her arms last year. They apparently see stuff like this all the time in JDMS patients. She suggested that we apply Neosporin to the skin to help it heal.

We made an evening appointment for another infusion for Julia a couple of weeks out so she doesn't have to miss any school. Whether we need it or not depends on how Julia's blood tests come back, and what Dr. S.'s opinion is (he's away on vacation until next week). If her numbers stay about the same, we'll probably keep on doing what we're doing. If they're better, we can push out the next infusion, plus keep tapering the oral Prednisone. If they're getting worse, we have already vowed to be a lot more aggressive in jumping back in with whatever it takes to get the numbers back in line again. They talked about how earlier this year, the numbers crept up and up, and we kept playing the wait-and-see game.

3/30/99 Test: 10.2 293 290 47 36
4/27/99 Test: 11.4 413 348 68 69
5/25/99 Test: 12.4 544 347 59 42
6/22/99 Test: 15.7 943 393 82 59
6/24/99 Test: 8.6 285 318 45 46
7/1/99 Test: 10.6 432 303 49 42
7/8/99 Test: 8.5 284 265 37 23
7/15/99 Test: Not Done 330 290 42 23
7/22/99 Test: 3.0 292 392 53 30
8/5/99 Test: 7.3 161 283 30 25
8/19/99 Test: 7.8 167 291 30 19
9/1/99 Test: Not Yet 149 274 30 24
Normal Range: 3.0-16.0 4-150 110-295 10-34 6-59

Thursday, September 2

Today was Julia's first day of school! A proud third grader now. There were the usual snafus with the bus scheduling (they have problems with this every year, for some reason). She was complaining about going to school for weeks, but after today se didn't seem to mind so much. Good news: she to the teacher she wanted (there are two 3rd grade teachers at her school). Bad news: all of her best friends from last year are in the other class.

Dr. A.W. called tonight with the test results. Wow!! All Julia's numbers are now in the normal range! This is great news, especially considering the fact that we lowered Julia's Prednisone dose 2 weeks ago. The doctors were frankly expecting things to get a little worse, so this is actually great stuff, better than expected. All Julia's other tests were also normal (Sed Rate 8, WBC 5.48, crit 36.7, Platelets 356).

The upshot of all this is that we're going to lower Julia's oral Prednisone dose again, to 15mg, starting tomorrow. You should have heard Julia cheer when she heard that! This tapering schedule is actually more conservative (slower) than when we tapered at the beginning of this year. This is deliberate - we are not going to take any chances this time. We will be maintaining the same infusion schedule for the time being, so we will keep that scheduled infusion in 2 weeks. Also, we will not have to increase the Methotrexate dose.

The only problem with the next infusion is that it's on Tuesday. If Julia gets her Methotrexate on Tuesday, she'll be miserable on Wednesday, which is her gym and dance day. We really want to avoid that - she probably can't do both gym and dance if she has to have MTX the night before, she'd be too tired. The solution is going to be that she will keep getting MTX on Wednesdays. The only downside is that Julia will have to get an extra needle during weeks that she gets an infusion, but she's okay with that.

Friday, September 3

Julia still has that skin problem on the back of her hand. It's developed into an open sore and it's causing her a lot of discomfort, especially at bedtime. Tonight was especially trying - she complained that it hurt, so we put some antibiotic creme and a bandage on it. Didn't help. Gave her a Tylenol, still couldn't get to sleep. She didn't get to sleep until 11:30, hours after her regular bedtime. She was just miserable.

Current Drug Dose: Prednisone: 15mg/day Plaquenil: 200mg/day Folic Acid: 1mg/day Methotrexate: 30mg/week

Saturday, September 4

Being up so late last night, Julia was extremely tired today. She was going to come with me when I went to donate blood this morning (she's always liked to come with me, even before she had to get needles of her own), but she was still sleeping when I left. After I got back, we went for a ride and did a little shopping, and she was pretty cranky all day, very impatient and irritable. It's so hard to be patient with her when she's like that.

Sunday, September 5

Our church is back to doing the Sacrament of the Sick on the first Sunday of the month, after stopping it for the summer. We did manage to get Julia a couple of celebrations of the sacrament, but this little service our priest does is wonderful, and really brings the community in to it. Julia always looks forward to it, and always like to be first in line to get her Sacrament.

The three of us went to see a wonderful movie today, This Sixth Sense. If you haven't seen this film, don't miss it, and don't let anyone tell you about it beforehand. If you have seen it, make sure you go again to catch the details; they really did a great job with it.

Julia is still being quite tired and cranky today. We were talking about it, and we're wondering if it may be related to reducing her Prednisone dose on Friday. I recall that earlier this year, we were seeing some of this when we were tapering the first time, especially when the percentage drop in dose was relatively high. If that's it, she should be doing better in a couple of days.

Monday, September 6

Happy Labor Day - for those of you outside the US, this is a national holiday for all workers. We took a road trip to visit my parents and my brother and his wife (Hi everyone!). They were having a picnic. We ended up not staying too late. It is a "school night" for Julia, and she was also still feeling tired. What a weird weather day - while driving, we'd go from torrential downpours to sunshine and back again in a matter of minutes. They say it was the remnants of Hurricane Dennis.

Wednesday, September 8

It was a busy day for Julia - she had two doctor's appointments and a shot today.

She got a clean bill of health from the eye doctor, although he did say that she was showing some preliminary signs of myopia (nearsightedness). This is no surprise whatsoever, given that both her mother and me are nearsighted, me very much so. I wore glasses starting in first grade that got progressively thicker until I got to high school.

Julia also went to the dentist for a cleaning and checkup. Her gums are showing signs of weakness, but after hearing about all the medication Julia is taking, they are chalking it up to that. Julia is very good about brushing twice a day and flossing every night, so she's doing as well as she can. She did have no cavities. We also scheduled a "bonding" procedure for next month for her molars.

Julia got her 30mg shot of Methotrexate tonight, which is going to go back to being a weekly event. The last couple of times she's gotten a shot has been painful for Julia - not the needle going in itself, but while we depress the plunger and for several minutes afterwards. We've been having her put a cold pack on it, and that seems to make the pain go away within a few minutes. I honestly don't think we're doing anything wrong procedurally.

We also had to have a long talk with Julia tonight about her appearance. She went into a crying fit about how bad she thinks she looks, and how fat she is. She said she's rather have muscle weakness than have the rash on her face. This, of course, is not actually true; last spring when she was having trouble climbing stairs and pouring a glass of milk and was tired all the time, she was singing a different tune. It's difficult to be rational with an 8YO who's crying and is on medication.

We told her how beautiful she is, and how the weight gain and the rash are temporary, and how she'll go back to being her old self after we get through this all. We told her how smart she is, and how hard she works, and how sensitive and compassionate she is, and how all those things make her beautiful, too. How sad it made us to see her like this.

Thursday, September 9

We took Julia to a podiatrist to have a look at the plantar warts on the bottom of her feet. We've been trying to treat these ourselves since about last Christmas, to little avail.

The doctor has me fill out a medical history form. Naturally, this took a few minutes. He looked them over and he had heard of Dermatomyositis. He noted that she was taking Prednisone, and said that it's immune-supressing effect is at least contributing to the spread of Julia's warts. He went on to explain that warts can be caused by hundreds of different viruses, and that getting rid of these is no guarantee of preventing more in the future.

He used a special knife to remove the top, dead layers of Julia's warts on her right foot (located on the ball of that foot). As he did this, he explained our options to directly remove the warts. First, he said that cryotherapy (freezing with liquid nitrogen) was more painful and less effective than other treatments, so that was not advised. We could have the warts excised (cut out), but that would require a series of injections of a local anesthetic, like novocaine, which are themselves quite painful. The third option is applicaion of Cantharone, an acid (in part made from crushed beetles) that causes a blister to form under the wart, cutting off it's blood supply.

He recommeded the acid treatment. It's essentially painless at application time, and it's very effective. He applied a few drops to the biggest of her warts, put a covering over them, and bandaged her foot up. We got an instruction sheet that basically said to leave the bandage on until tomorrow and keep it dry. It will blister and be somewhat painful, but we can give her Tylenol and ice packs to relieve the discomfort. He said it may look nasty in the morning, but the nastier it looks, the better it's working.

He then mentioned that a drug therapy exists. Tagamet (cimetidine) has been found effective to treat warts. He mentioned an article in Archives of Dermatology that said that this therapy was safe and effective. He didn't think there was any cross-effects with the medication she's already taking. He said the dose was 100mg 3 times a day for 3 months. I will email Dr. A.W. and see what they think.

Givig Julia a bath tonight was interesting. It seemed impossible for her to get in the tub without getting her foot wet. I got the idea to put a rubber glove (one of the ones we use when we give her an injection) on her foot. It looked ridiculous, but it worked great!

Friday, September 10

Julia woke up this morning in a lot of discomfort. The bottom of her right foot looked very nasty - 2 huge blisters at her warts. I guess this is good, but she was in a lot of pain. It was a toss-up whether we would even let her go to school. We gave her a Tylenol and an ice pack. I put bandages on the blisters, but they are very sensitive to touch. Getting that shoe on was the worst part.

She could barely walk - shuffle was more like it. She really wanted to go to school, and we felt that it would get better as the day wore on, so we packed her another Tylenol for later if it got bad, and drove her to and from school. I couldn't see her trying to get on the school bus like that. There were a lot of tears and frustration this morning.

Julia did end up taking that second Tylenol late in the morning, but she made it through the school day. The blisters have merged into one giant blister, about an inch and a half long, nearly and inch wide, and at least a quarter inch thick. It looked nasty, to be sure! She had a tough time walking with it, and a difficult time falling asleep.

Today, I received my extra copies (Thanks, T!) of the JM Messenger, the quarterly newsletter for Juvenile Myositis patients and their families published by the Myositis Association. Right there on page 2 is a 2-full-columns article on this Diary. It's based on the email interview I wrote about last month, and it's teriffic! I want to welcome everyone who's visiting the Diary because of this article, and thank the MAA and the publisher of the newsletter for the kind words and the exposure for this site.

Saturday, September 11

The blister looked very bad, full of fluid, and very tender. Julia could basically not walk on that foot this morning. We decided to lance the blister to see if it would help. We used a spare needle from her injections - very small and thin, and sterile. I jabbed the blister and a clear fluid immediately started coming out. Within a few minutes, the blister was visibly a lot smaller, and the relief for Julia was incredible! She could walk again. We taped a sterile pad to the bottom of her foot and got her dressed before we went out shopping. She walked around basically without pain. Phew!

The good thing is that these were the biggest cluster of warts that will have to be attacked. The rest of them are smaller, so should not cause as big a problem for Julia.

I also got an email from Dr. A.W. about the Tagamet. She said that there were not adverse side effects or interactions with the drugs she takes, but that ut can sometimes cause fluctuations in blood tests. We're scheduled for another infusion next week, and we'll talk about it some more then.

Sunday, September 12

We lanced Julia's wart blister again this morning before church. It looked a lot better, and by tonight, it had completely drained. Good stuff, and Julia is walking almost normally again.

Tuesday, September 14

Julia had another infusion tonight; we scheduled a late appointment so she wouldn't have to miss any school. This was our first after-hours visit to Children's (not counting being admitted). They have the CAT/CR staffed until 9:00PM (not every night, but I don't know what nights). Julia seems to have lost a pound since last time, but she's about the same height.

The infusion went well. They knew about the fact that they weren't supposed to give Julia her Methotrexate, because we're giving it to her tomorrow at home to minimize the impact on her gym class and dance lessons. Dr. A.W. also ordered a von Willebrands factor lab test this time.

Dr S. and Dr. A.W. both came by to see Julia tonight - the first time I've seen them together in quite a while. They both commented on how much better Julia's rash looked. We actually had a notion to ask about her rash not seeming to be getting any better, but when you see her every day, it's easy to lose objectivity.

I asked about the Tagamet that the podiatrist recommended. Dr. S. said to go ahead and try it - but he's very skeptical. He said that he expects that it will have no benefit. He said that Tagamet has been recommended to treat a host of ailments over the years, but has always proven ineffective when examined closely. The drug usually has no physical side effects, and affects the blood tests only slightly, if at all (CBC down slightly, AST and ALT up slightly). They will compensate for these anomalies when they examine Julia's blood tests in the future.

They said that we should stop treating the sore on the back of Julia's hand now that it's not an open sore any more and let it clear up on it's own. We should only put something on it if it opens up again.

Finally, we decided to go to an infusion every 3 weeks instead of every 2 weeks. This is contingent on her blood tests this week staying in the normal range, and it means we won't reduce the oral Prednisone dose for now. Dr. S. said that Julia's strength does not seem much improved for now, but he also said that it usually takes a long time to come back, but once it reaches a certain point, it comes back quickly. As long as her numbers remain good, her strength will gradually improve.

3/30/99 Test: 10.2 293 290 47 36
4/27/99 Test: 11.4 413 348 68 69
5/25/99 Test: 12.4 544 347 59 42
6/22/99 Test: 15.7 943 393 82 59
6/24/99 Test: 8.6 285 318 45 46
7/1/99 Test: 10.6 432 303 49 42
7/8/99 Test: 8.5 284 265 37 23
7/15/99 Test: Not Done 330 290 42 23
7/22/99 Test: 3.0 292 392 53 30
8/5/99 Test: 7.3 161 283 30 25
8/19/99 Test: 7.8 167 291 30 19
9/1/99 Test: 7.7 149 274 30 24
9/14/99 Test: 5.5 119 268 26 20
Normal Range: 3.0-16.0 4-150 110-295 10-34 6-59

Wednesday, September 15

Dr. A.W. called tonight with Julia's lab results. Great news! These results are "better than we could have expected". Her numbers are all still in the normal range and falling. The CK number of 119 is the most encouraging. Her other results are: wbc 6.58; hematocrit 39.2; platelets 380.

As a results of these tests, we are going to start with infusions every 3 weeks instead of every 2 weeks. If all continues to go week next time, we'll continue dropping the oral prednisone.

Friday, September 17

Hurricane Floyd, which earlier this week hit Florida and the Carolinas, threatened us here in the northeast. It turned out to be not that big a deal, as the storm accelerated and went past us much more quickly than expected. We did get planty of rain, which no doubt helped our drought sitruation, but the winds weren't that bad, luckily. Julia and I hunkered down at home last night while mom worked (she has storm duty when big storms hit).

Sunday, September 19

After the storm, this weekend's weather was just about perfect. Julia was in exceptionally good spirits today. She was very much her old self today, happy and playful and just a lot of fun to be around. Her face rash is looking great today, hardly noticible at all. She had a lot of energy.

We also got email from Dr. A.W. with Julia's Aldolase results: 5.5, also down from 2 weeks ago, and now low in the normal range. More good news!

Thursday, September 23

Happy autumn! Summer is finally over. Hope that doesn't depress anyone.

Despite being fully active this week, with Gym class and Dance lessons yesterday, plus having her regular Methotrexate injection last night, Julia is in exceptionally good spirits. Her mood is wonderful! This really makes us appreciate it when she's feeling good. I hope we can hold on to this if we get to the point where she's not feeling so good again someday.

Saturday, September 25

Julia and her mom went shopping today, while I spent the day traveling back from a business trip (I left early on Wednesday). It was tough to be away, tougher than I thought it would be. I really missed "the girls". Anyway, I had the airport limo drop me directly at the restaurant where we decided to have supper. Cool. Julia was in a very crazy mood tonight, and got into a giggle fit at one point.

Monday, September 27

Julia went back to the podiatrist for another wart removal. This time, we went after the next biggest wart, the one on her left heel. This one is a lot smaller than the last one was, plus it's not on the ball of her foot, so it won't be a difficult for her to walk on it.

The treatment want very much like last time. The doctor also wrote us a prescription for Tagamet - however, he wrote it for 800mg a day! (that's 200mg in the morning, 200mg after school, and 400mg at bedtime) That's a lot higher dose than he was talking about last time, and less than what we discussed with her regular doctors. He also said that we would have her take it for up to 6 months, instead of the 3 months we talked about. I had to send an email to Dr. A.W. to see if the increased dose and duration is a problem or not.

Tuesday, September 28

Took the bandage off the wart on Julia's heel. It looks ugly, but not nearly as bad as the first one. It about the size of a dime; the first was over 1.5" long and about 1" wide. After we taped a gauze pad to it, Julia was able to put socks and shoes on without too much trouble. We'll lance it when it looks like it needs it.

I didn't hear back from Dr. A.W, so I called her. She was going to have to check to see if the Tagamet dosage is correct. She did call back in the evening, and confirmed that 800mg/day is an appropriate dose for someone Julia's weight. She said to go ahead and start giving Julia the medicine.

Julia and I had a very nice chat online at the Yahoo! DermatomyositisSupport Club site tonight. There were several other people in there chatting, and it was a very good time. We have chats every Tuesday and Thursday. Julia is starting to look forward to these.

Wednesday, September 29

We picked up the prescription for Tagamet (actually, the generic equivalent Cimetidine) today, and gave Julia the bedtime dose of 400mg. The pills are small and green, and seem to be coated, so they're very easy for her to swallow, thankfully. Starting tomorrow, she'll get 800mg/day.

Current Drug Dose: Prednisone: 15mg/day Plaquenil: 200mg/day Folic Acid: 1mg/day Tagamet: 400 mg/day Methotrexate: 30mg/week

Thursday, September 30

Current Drug Dose: Prednisone: 15mg/day Plaquenil: 200mg/day Folic Acid: 1mg/day Tagamet: 800 mg/day Methotrexate: 30mg/week

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Updated September 28, 1999
Copyright © 1999 by Ralph Becker <ralphb@whoever.com> send me Feedback!
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