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Sunday, November 1
Julia received the Sacrament of the Sick again today, and believe me, we're praying hard for her. That rash of hers just won't give up. It has the occasional good day, but lots more bad than good days lately.
Tuesday, November 3
This is the trip to the Hospital that we've been dreading. Julia's rash looks very bad today, probably at least as bad as it did when this whole ordeal started. She's even got some papules on her toes, which has never happened before. We just fear that this is a sign that things are not going well.
This trip was a little different for us logistically. I went to the hospital straight from work, while Julia's mom picked her up at school and met me at the hospital. We did this so that we could have Julia's blood work done first and then have the appointment, so we could get out in time to get her to CCD. This went well! We met at the hospital, grabbed the paperwork for the lab, then got the blood drawn. Then, we headed down to the hospital cafeteria for lunch. We were done a half an hour early, but the doctors wanted to go offsite for a while so they were actually glad to see us early!
Stats: Weight: 35.8kg/78.9lbs. Yikes, up 5lb. Halloween certainly didn't help there. Julia is still beating herself up over gaining weight, but it's not her fault. Mostly, weight gain is a side effect of Prednisone, but also her parents haven't exactly been eating well lately :(. Height: 49.5"/124.9cm. Up half an inch. Could be a measurement error. Probably is, what with the Prednisone dose since the last checkup. Blood Pressure: 119/69. Excellent!
Dr. A.W. did the initial clinical exam. She said Julia's strength was great! We got a "wow!" to almost every strength test. We did talk for a while about the rash, and she said that there is a lot of variability from day to day and week to week. The most important thing is the strength (and the associated lab results). She was asking Julis about whether she's keeping up with the other kids, and so on. Based on her clinical exam, she said we have no reason to expect that she's doing anything but good. She also talked to Julia and asked about Halloween, her school bus situation, etc.
Dr. S. came and and repeated the clinical exam. He said her strength was excellent, and he also said that he expected her blood work to be on track this time. He said that the rash is being caused by us reducing the Prednisone, as that's the only medication she's taking that has an immediate effect on the rash. Since we're tapering the dose, the rash can assert itself, but that doesn't mean there's any muscle involvement - he specifically said they are seperate processes. Methotrexate has no effect on the rash, and Plaquenil takes a long time to work.
Dr. S. left, then came in with an entourage of 3 other doctors (residents, from what I could tell). He wanted to show them Julia's symptoms. He was showing them how the JDMS rash is different from a Lupus rash. They put some petroleum jelly on Julia's fingers and looked at the blood vessels in the capillaries in her nailbeds. He said that they are displaying the characteristic damage caused by the disease better than they can see in their textbooks. He explained that this capillary damage is exactly the kind of damage they'd look for in the muscle tissue if they'd done a biopsy when she was first diagnosed.
We asked about whether we should have Julia get an influenza vaccine. Since the vaccine is a killed virus type, there is no danger of contracting an infection from it. Getting the flu while on Prednisone can be potentially dangerous, he did recommend that we give her the shot. The only side effect is a sore arm for a day or so. The nurse gave Julia the flu shot at the end of the exam. It hurt her for a couple of seconds, but that's a lot less than she would have hurt if she got the flu!
Finally, we asked about what we can do for the rash. Dr. S. said that the rash is not serious, meaning that it's not deep or permanently damaging to Julia's skin at this time. He checked with Dermatology, and if it does get any worse, there are other things we can do. The Prednisone dose can be increased, but we don't want to go there. He suggested that Intravenous ImmunoGlobulin (IvIG) treatment is very effective against the rash, but it is a long procedure (4-6 hours with an IV inserted), and has frequent minor side effects, like nausea and headaches. He did say that we can do "pulsed steroid" treatment, which is what she would have had if her symptoms had been any worse at first back in March. This means giving her a high dose of steroids (usually methylprednisolone) intravenously, up to 500-1000 mg/day for 1-3 days, and might mean an overnight stay at the hospital. However, the side effects are minimal compared to the other options, and if it does get significantly worse, that's probably what we'll try.
We are going to slow the Prednisone taper. Pending the results of the lab work, we're going to reduce the Prednisone by 1mg/day every 2 weeks, starting in a week and a half. Dr. S. said that at Julia's current body weight, the toxic dose is about 8mg, so within a month we should start seeing a marked improvement in her side effects, notably she should start growing again. Dr. A.W. is going to call with the results of the blood work, should be by Thursday. I also said she could email them to me if she prefers. I expect a call.
Overall, we are feeling a tremendous sense of relief that this worsening of the rash is not serious, that it has a good explanation, and that we're on a good track.
Friday, November 6
Dr A.W. sent me the results of Julia's lab tests today via email (love that Internet :). The results are good! All the numbers are within the normal range, as you can see from the chart above. In addition, other results include: ESR 1, White Blood Cell Count 4.12, Hematocrit 40.7, and Platelets 398. This means that we're going to go ahead with the plan to reduce the Prednisone dose by 1mg every 2 weeks, starting 11/14. That means we'll be at the toxic dose level for Julia's body weight of 8mg/day before the end of the month. This is awesome news! Thanks to everyone who has been praying for Julia.
Julia spent this weekend at her grandfather's house because this evening, and all weekend. That's because today is the beginning of a Marriage Encounter weekend that my wife & I are helping to present. We both find ourselves very nervous and apprehensive going into this weekend. We remember how important that weekend was for us, and we want to make it important for all the couples attending.
Sunday, November 8
The M.E. weekend went fantastically well, but we both miss Julia very much, and we won't see her until tomorrow. We talked to her on the phone, and she's doing great, but misses us, too.
Saturday, November 14
Julia is still having good days and bad days with the rash, but all in all it seems to be more stable this week. Today, we reduce the prednisone dose again, from 10mg to 9mg. She was happy not to have to take the big 10mg pills any more (at least for the time being).
We had a bunch of Marriage Encounter friends over tonight, and one of them brought their 12 year old son along. He and Julia had a blast - they played together until after 11:00!! He just had a birthday and got a Sony PlayStation. They played that, watched some TV, and played some board games that Julia has. My, but she was exhausted after that!
|Current Drug Dose:
||Folic Acid: 1mg/day
Thursday, November 19
Julia seems to be coming down with a bit of a cold. She's been complaining about waking up with a sore throat every morning for about the past week, but it was a lot worse this morning despite the fact that we set up a humidifier in her bedroom earlier this week. She didn't feel sick enough to stay home from school, and she felt much better later in the day.
We got Julia's school pictures back today. I think they look great! She is really photogenic; she's always photographed well (unlike me, ugh), even when she was a baby. Julia says she doesn't like them because of the JDMS.
Sunday, November 22
Julia's cold has turned into mostly a nasty cough. She's okay most of the time, but breaks into horrendous coughing fits at random times and places, and she can't fall asleep at night because of the cough. We've begun giving her an over-the-counter cough medicine with a decongestant included. She gets one about half an hour before sleep time, and she's good to go. We try putting her to bed with extra pillows to prop up her head (to help with the congestion), but she's off the pillows within a few minutes. I don't know how she does it, but she never uses her pillow. Personally, I can't sleep without one, preferably two.
Wednesday, November 25
Julia seems to have developed a small wart on the bottom of her right foot. My wife had one of these a few years ago, and didn't catch it while it was small, and eventually had to have is excised with a laser. Needless to say, she wants to get rid of this one before it gets to be a problem. These things can also spread (they are apparently caused by a virus), so it is best to get them while thsy're small.
There is a salicylate-based gel that will remove warts. It needs to be applies once or twice a day for up to 12 weeks. I guess patience is required, but not as much as for Plaquenil (Julia's been on that for nearly nine months now). However, we didn't know for sure if would be any problem with the medication. I sent Dr. A.W. an email, and I had a reply back within a couple of hours. She echoed that it's best to treat these while they're small, that the gel is the recommended method, and that there's no problem with the medicine. A quick trip to the drugstore, and Julia had her first of many wart treatments.
Thursday, November 26
Happy Thanksgiving! We had some family over today for the first time. It was very nice, and pretty relaxing once we got past having to do all the cooking. We pray that everyone has a safe and joyful holiday (even if you're not from the US and it's not a holiday!).
Friday, November 29
While my wife & I went to my High School class reunion, Julia went to see one of the many movies we're hoping to see this year, A Bug's Life. She said it was good (but then again, she's thought every movie she's ever seen has been good). She's still coughing, and we gave her a cough pill to take before the movie so she wouldn't disturb the other prople at the theatre. According to the adults there, it worked great.
Saturday, November 28
Time once again for a drop in Prednisone dose. Time has seemed to go by so fast, I have to check the calendar to make sure that it's actually time to change the medication dose. Let's see...yup, drop to 8mg today. The rash is still having it's good and bad days, but more good than bad lately, I'd say, and it's looking pretty good today.
|Current Drug Dose:
||Folic Acid: 1mg/day
Monday, November 30
Julia's cough finally seems to be better. We actually forgot to give her a cough pill at bedtime tonight, and she slept just fine.
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