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Wednesday, March 1
We got an email from Dr. A.W. with the first results from yesterday's blood work. CK and AST are about the same as last time, LDH is down significantly, which is great considering how stubborn the LDH number was last year, but ALT was up pretty significantly, from 20 to 32. Dr. A.W. implied that the high normal for ALT is 30, but my records indicate 5-69, which would still put the reading well within the normal range. I emailed her back asking for a clarification. She also said that it may just be a lab accuracy issue.
All the rest of the results were normal; albumin 4.2, white blood cells 5.7, hematocrit 40.1, platelets 414, and sedimentation rate 4. We will be waiting for the results of the Aldolase and von Willebrands factor tests before we decide whether to drop Julia's Prednisone to 8mg/day.
Saturday, March 4
Well, I'm away on retreat this weekend, and Julia and her mom are doing the usual: hanging out at home watching rented horror movies, and shopping.
Monday, March 6
We got an email from Dr. A.W. today, as Julia's Aldolase number came in. It was at 6.0, which is great. So far, so good. Now, we just have to wait on the von Willebrand's test result.
Julia's strength seems to be doing much better. She is actually able to do a situp again! I also have to say that her face rash looks great, a lot better than a few weeks ago. Maybe the Quinacrine is working. We can hope!
Tuesday, March 7
Well, the von Willebrand's factor test came in today, and Dr. A.W. emailed us the result. It's at 190, which is above normal (160), and higher than last time. In keeping with out request that we be conservative with the taper, we will be keeping Julia at 9mg/day of Prednisone for the time being. We will be bringing Julia in for a blood test on an upcoming weekend between clinic visits. If things are back in line after that, we'll go down then.
This is pretty seriously disappointing news. We were pretty much counting on going down to 8mg this week. That level is a good one to hit at Julia's weight, being at or below the body's normal level of corticosteroid production.
Wednesday, March 8
This Ash Wednesday, the beginning of Lent in the Catholic (and most other Christian) church. Ash Wednesday is supposed to be a day of sacrifice, of remembering all the Lent represents. Catholics are supposed to "fast", which consists of having just the equivalent of one full meal during the day. I usually take it to the literal definition of fasting, and I don't eat at all on Ash Wednesday (or Good Friday).
Julia decided to be noble and tried to literally fast, too. This turned out to be a mistake. We already know that she gets crabby and tired a few hours after eating, and a snack usually perks her up. By the end of today, she was miserable. Everything seemed to bother her, she couldn't sit still, and she was in tears by bedtime.
Next year, we'll find a way for Julia to celebrate Ash Wednesday without fasting.
Monday, March 13
Julia's strength seems to be improving. She can actually string a coupld of situps together now, and she's been practicing her dance steps at home. However, she has developed a nasty rash on her legs, specifically her inner thighs. It's all red and angry looking, but streaky, not like a diaper-type rash. We've started putting cortisone cream and other lotion on the rash each morning after her shower. Hopefully, it'll start looking better in a few days.
Tuesday, March 14
Julia went to the dentist today and got a clean bill of oral health once again. The dentist did comment that some of Julia's teeth seem to be taking a long time to come in. We mentioned Prednisone, and how it essentially stops bone browth, and perhaps the same mechanism affected teeth as well. He didn't know, surprisingly. I'll have to ask the docs next time.
Saturday, March 18
After I donated blood, I took Julia in to Children's for a blood test. We wanted to have her labs done about now so that we cound get results between clinic visits. They gave us the option to have the blood drawn and tested locally. However, Boston is less than an hour away, and they really know what they're doing there. These people draw blood from kids every day. Also, getting tested in the same lab means we wil get consistent results. Sometimes labs have different standards, which can confound the results. Our doctors have immediate access to the results, too, which means we get them faster.
After Children's, we had some lunch as a family, then went to a movie. Not a bad day, considering we got snow yesterday!
Sunday, March 19
We went to a pool party today. It was sponsored by our "official" local JDMS support group. the local Arthritis Foundation. There were about 8 kids there, some right around Julia's age. She spent almost 2 hours in the pool, throwing a ball around and gooding around with the other kids. She had a great time! She really loves these things, but she missed the last one in January because that was when we discovered she had broken her arm. This one was held at a rehab facility that's a lot closer to our house, which made it very convenient for us to go.
We got to meet up with a bunch of other parents; many of them looked familiar from the last time we came to one of these. We were the only JDMS family there, and frankly they just couldn't relate to us any more than we could to them. Still, there is some common ground (especially Prednisone), and there was no lack of conversation.
Julia seems to be stronger than she's been since the beginning. She can now do a series of push ups, and she is now able to lift herself out of the pool, though just barely. It's great to see that. Not only that, but swimming in the warm water didn't make her rash go crazy, and she looked all but completely normal by bedtime.
Monday, March 20
Happy spring, everyone. It was a happy day for us, as Dr. A.W. emailed us the first of Saturday's results. Julia's CK is down to 54, and her LDH is down to 213! This was fantastic. In addition, Albumin is 4.0, and sed rate is 6, all within normal. The AST and ALT are also in normal, so maybe last month's ALT number was just anomylous. We're all very happy about this.
Wednesday, March 22
Dr. A.W. just emailed us the rest of the numbers. Aldolase is 5.2 (!) and von Willebrands is 148 (!!). These are fantastic numbers, perhaps the best ever since Julia was diagnosed. Dr. A.W. even used the taboo "R-word", remission. However, we don't want to get ahead of ourselves.
The next step is tapering - however, they want us to start tapering Methotrexate instead of Prednisone. The reason is that Julia's White Blood Count, which came in at 3.74, is a little low. She said that many things can cause WBC to be depressed, like illness, but Julia has actually been quite healthy for the last several weeks for a change. However, one side effect of MTX is a depressed WBC, and even though this is only a slight depression, it'd be better to taper MTX first for now. The plan is to go from 30mg to 27.5 mg.
Now, we normally give Julia her MTX injections on Thursdays - tomorrow. However, our pre-filled syringes all have 30mg doses (1.2ml) in them, and we just got a month's supply delivered to us today. We certainly don't want to wait to drop the dose, but it'd be a shame to waste the syringes that have already been delivered to us. The plan is to just squirt out a little (0.1 ml - just a few drops, really) MTX from each syringe to bring the dose down to 27.5mg (1.1ml). I think we can handle that.
No matter how we handle it, this is great news. We're all very happy.
Thursday, March 23
Well, we talked to Dr. A.W. on the phone last night, and she said that we should not try to alter the dose by squirting out the excess MTX. They want us to hold off until next week to lower the Methotrexate dose. She said that what we want to do "violates the pharmacy protocol" and we should just wait.
The heck with that.
We took every precaution. We squirted out the 0.1 ml onto a sterile gause pad (it barely moistened the corner of a 2" square), and immediately put it into our "sharps" container, the one where we put the spent syringes. Not a drop touched human skin, nor ever should. The actual injection went as smoothly as ever.
We have the good lab results, we have a good reason to want to reduce the MTX dose immediately (low WBC), and we made an executlve decision.
I just hope the docs aren't reading this :-)
|Current Drug Dose:
||Folic Acid: 1mg/day
Saturday, March 25
We were out shopping briefly today, a beautiful early spring day. In the sunshine, we noticed that Julia's skin is turning yellow in places, especially her face and arms. It's very blotchy and most of her skin is normal, but the color is unmistakable. She's taken to calling herself Pikachu, and running around the house yelling "Pika! Pika!" (if you or someone close to you is not into Pokémon, you won't understand this). Anyway, this is a not unexpected side effect of Quinacrine, the drug we started after stopping Plaquenil a few weeks ago.
Sunday, March 26
Today, we took a drive to a town north of Boston for a meeting of Myositis people from the area. This is only the second such meeting that this group has held, and the first that we were able to attend. There were people representing a wide array of Myositis diseases - Inclusion Body Myositis (IBM), Polymyositis (PM), Dermatomyositis (DM), and of course Juvenile Dermatomyositis (JDMS). There was one other JDMS mom there, someone we'd already met in the CAT/CR at Children's Hospital. There were also a couple of people that I'd met at last years' MAA Conference, so it was not all unfamiliar faces.
The group was scheduled to have a speaker, someone who was going to talk about nutrition, but they had a last minute medical emergency and couldn't attend. We basically went around the room and shared our stories. Julia spoke for herself, and she did an excellent job telling everyone about JDMS. Everyone already know about Julia through the Diary, and in fact she was apparently a hot topic of conversation at the previous meeting that we missed.
It was very nice to be able to share in a face-to-face forum like that. It was very reminiscent of the Conference, except everyone at this meeting was from Massachusetts. We are planning a summer barbecue and a fall meeting before this year's Conference.
Wednesday, March 29
Julia woke up miserable this morning. She complained about sleeping poorly, waking up several times during he night, and we heard her coughing several times. She also felt warm, and it turns out she had a fever of 101.6°. She also had a headache and was a bit dizzy We gave her a Tylenol and after a little while she seemed a little better, and she took a nap. Needless to say, she didn't go to school today.
I took her to the doctor to be checked out. The doctor was very patient and thorough, and took a keen interest in Julia's JDMS after finding out that the rash is not a symptom of her latest illness. Julia explained to her very well exactly what medicine she takes, how much, and how often. We quickly explained about her course with JDMS over the past 2 years.
She took a cotton swab sample of Julia's throat to be tested for Strep Throat. She said the symptoms were classic of Strep, except for the cough, which may mean it's a virus. They did a rapid Strep test, which means results come back the same day. The test came back negative, so she doesn't need antibiotics.
Julia stayed home all day and just took it easy, rested, and drank lots of fluids.
Thursday, March 30
Julia is still not feeling great this morning, although her fever is gone. She decided to stay home from school another day to rest up. By the end of the day, she was feeling really lousy again, and her fever was up in the mid-99s again (not high, but above normal for her).
Friday, March 31
Julia is feeling pretty tired this morning, after a not-so-good night's sleep. She's going to stay home from school again. Julia's teacher has been wonderfully cooperative about putting Julia's homework together each day so she doesn't fall too far behind.
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