Back to July
Forward to September
Saturday, August 1
Little, if any, extra tiredness reported from today's Methotrexate dose.
Monday, August 3
I've heard of a lot of tiredness caused when Prednisone dosage is lowered, but we've been lucky and have never seen this. Today, when we changed her Prednisone dose from 8mg to 6mg, was no exception. An otherwise routine day. The only unusual tiredness we've seen is on some Saturdays, the day she gets Methotrexate.
|Current Drug Dose:
Saturday, August 8
Julia was reported to be very tired today, almost to the point of falling asleep in church this afternoon. She was also rather lethargic sluggish, and didn't want to do much of anything.
Monday, August 10
Julia has been complaining about her mouth hurting the past couple of days, and we were worried about it being an oral lesion of some kind that is a common side effect of Methotrexate. We're giving her a multivitamin daily with 300mcg of Folic Acid to prevent this, but it can still happen. Happily (?), it turns out that Julia is just sprouting a new molar on the upper right side of her mouth.
She's also been complaining about a sore throat for a few days now. There has been a summer cold going around, and Julia may be getting it. I just hope it won't be too severe, we have a busy rest of the month ahead of us. Our whole family has been remarkably free from routine illness ever since Julia was diagnosed with JDMS, which is good considering the possible weakening effect on the immune system that can be caused by Prednisone.
Monday, August 17
Julia's been complaining about her tongue and mouth hurting the past couple of days. We can't see any sores in there, but we were warned that Methotrexate can cause this problem. We are trying to compensate - we changed her chewable daily multivitamin to one that has 400mcg of Folate (folic acid), up from the 300mcg she had before.
Wednesday, August 19
Julia got a bit of a sunburn on her upper arms and face yesterday while bike riding and swimming. Nothing serious, just a bit of redness. However, today her JDMS rash looks significantly worse. Her whole face is red, and the heliotrope rash on her eyelids is definitely more intense. She even has the rash on her knees, elbows, and knuckles, and even some small lesions on her fingernail beds.
It looks bad enough to call the doctor. I put a call in to Dr. A.W. She said that the rash is beng caused by the sun exposure. The disease itself makes her more succeptable to the sun, plus the medications all exacerbate that effect. She also said that the sun exposure will manifest often itself by the JDMS rash being more assertive. She also said that in the absence of other symptoms (like weakness or unexplained fatigue), that they will not change her medication based on just a change in the rash. The best indicator as to Julia's condition is the lab test results. Dr. A.W. didn't think we needed an extra or early visit because of this, and we'll just go see the doctors on schedule next week.
I also asked about when we should start seeing the Plaquenil take effect. After all, Julia has been taking it for almost 6 months now. She said that the sun exposure can delay the positive effect of the Plaquenil, but we should start seeing results soon.
Saturday, August 22
Well, the rash saga continues. Today, her face looks just awful, I mean her whole face is just bright red and swollen. Everyone is asking about her "sunburn". Her knuckles are also looking bad, very red, and covered with papules (bumps). Dr. A.W.'s assurance that this is just a reaction to the sun is nice, but this is difficult to look at.
Julia's mouth is still bothering her, but she says it feels a little better. I couldn't see anything in the way of a sore in there, but Julia's mom thought she could see a couple of spots near where Julia says it hurts.
We took a trip to Boston today - Julia & her mom went to the Children's Museum, and I went next door to the Computer Museum. Everyone had fun.
Monday, August 24
Today, Julia went to the pediatric opthalmologist, Dr. J.H., today for a checkup. She had a complete battery of eye tests, including glaucoma, eye pressure, cataracts, etc. Happily, her tests all came back completely normal and free of any problems. The doctor was incredibly knowledgable on JDMS and the side effect of Julia's medication. Plaquenil, which we were told had the most serious potential side effects, turns out to have vision effects only very rarely - in fact, the doctor had never, in his career, seen vision problems associated wiht Plaquenil. He was more concerned about Prednisone, which does have the real effect of predisposing Julia to cataracts. We'll be going back every 6 months for more checkups.
Julia's rash is suddenly looking much better today, at least her face anyway. The rash has subsided, and it's pretty much back to "normal" (for her), with just the eyelids and the cheeks red, and no swelling. It literally seemed to go away overnight.
Tuesday, August 25
Today was our latest visit to Children's Hospital. Unfortunately, due to a work commitment, Julia's mom couldn't come today. Obviously, this was not what she wanted, but it is going to happen from time to time, and it show Julia that dad can handle the job, too.
Julia weighed in at 33 kg, or 72.6 pounds, a gain of about 3 pounds. However, her height also increased to 125 cm/49". This is a bit of a gain in both departments, but doesn't seem excessive. Her blood pressure was about the same as last time, 135/69.
Dr. S. was on what we were told is a "rare" vacation, so we saw Dr. A.W. and a different doctor we hadn't seen before, Dr. B.E. We also had a different nurse taking Julia's history today, I guess we hit the week for vacations. This visit was very routine, except we talked about the recent flare-up with her rash, her Saturday tiredness, and her mouth soreness.
As we'd discussed with her on the phone last week, Dr. A.W. said that based on the sequence of events that the flare-up was caused by the sun. This is very common, and there's only so much that can be done. Julia was wearing SPF45 sunscreen and was only out a couple of hours, but that was enough to do it. The doctor said, basically, that you can't just move into a cave, and kids love to play outside.
Dr. A.W. still says that they don't see the Methotrexate causing tiredness, but the pattern is too pronounced in Julia for it to be a coincidence. Given that, she suggested what in retrospect seems obvious - just give her MTX at night instead of in the morning, and let her sleep through it. The medicine doesn't have to be administered exactly 7 days apart, so a 24-hour shift either way is perfectly all right. We'll give this a try this weekend, although with us going to a wedding on Saturday that Julia would probably have been distracted enough not to be tired.
Finally, we talked about the mouth soreness. The doctor sais that with the slight improvement when we increased Julia's Folic Acid intake, there's no reason to hold off on giving her a supplement. Starting tomorrow, she'll be getting a 1mg Folic Acid supplement with the rest of her meds in the morning.
At the end of this week, we're going to check the results from her blood work taken today, and if they're acceptable, we're going to continue to taper the Prednisone. We didn't discuss the taper schedule, but with her dose being so low now, any change is going to be relatively large (i.e., going from 6mg to 5mg is an 16.7% drop in dosage, 5mg to 4mg is a 20% drop, etc). I've heard of doing different doses on alternating days (6mg one day, 5mg the next) to soften the blow to the system.
Wednesday, August 26
We always knew that this might happen some time, but things have been going so well, we were beginning to get hopeful that it just wouldn't. Dr. A.W. called this morning with some bad new - Julia is suffering a "setback" in her blood test results. As you can see above, her CK is up to 251, LDH is up to 332, and AST to 41, all above the "normal" range. We also got some numbers back that are okay, namely ALT - 36, White Blood Count - 5.04, Hematocrit - 38.0, platelet - 373 and Sedimentation - 1.
Pretty much the only option is to increase her Prednisone. Dr. A.W. and Dr. B.E. talked and decided that we should go to 30mg of Prednisone, 15mg given twice a day. We'll do this for two weeks, then check her blood again. Dr. A.W. will contact Julia's regular pediatrician to arrange the blood work to be done near home, instead of having to go into Boston just to get blood drawn.
The good thing is that her clinical exan was normal - Julia is not excessively tired or fatigued, and her strength is normal. If this were not true, we may have been forced to admit her to IV steroid therapy. It appears that the rash flare-up last week was symptomatic of a general flare-up in the JDMS.
Julia has already had her 6mg of Prednisone today, so she'll get a 15mg dose tonight, and then start with the 15mg twice a day tomorrow.
On the bright side, Julia had a great time at a birthday party today. It was at a mini-golf place, and all the kids had a great time. After that, she went to the dentist and got a clean bill of oral health.
|Current Drug Dose:
||Folic Acid: 1mg/day
Thursday, August 27
Julia's first full day on 30mg of Prednisone, and nothing bad to report so far. No ravenous appetite, no mood problems; in fact whe seems almost better than normal in both respects. We didn't really see the serious effects the first time she was on a high Prednisone dose until the second full day.
|Current Drug Dose:
||Folic Acid: 1mg/day
Friday, August 28
Okay, now we're seeing Prednisone side effects.
Julia's appetite is okay, normal even, but her mood is unreal. She simply bursts into tears at the slightest provocation, and vascillates between perky and sullen from minute to minute. She's also very sluggish today.
Also, Julia went swimming for 2 hours yesterday and an hour and a half today and her face rash looks awful. Her whole face is just bright red, and it looks much worse under fluorescent light.
Saturday, August 29
We attended a wedding today, and Julia was invited to the reception - her first! It looked like it would be a great time, but Julia was in a terrible mood all afternoon. It was almost like she was depressed, if you can imagine. She was grumpy amd irritable, picked at her food, and wouldn't get up to dance, even once. She had to sit on someone's lap most of the time. We left early because none of us were having a very good time.
Her rash is particularly disappointing. We were hopeful that, with Julia on the lower dose of Prednisone, and with the time on Plaquenil, that she's look pretty good by the time school photo time came around. No such luck, apparently. We also talked about sending a note who Julia's teacher (we don't know who that will be until the first day of school) to explain Julia's medical situation. It's much better to keep everyone who has close contact with her completely in the loop.
We also started two changes in Julia's Methotrexate regimen today. From now on, she'll get it in the late afternoon or early evening instead of first thing in the morning. I'm hopeful that this will stave off the "drowsies" that we've been seeing on most Saturdays since we started on Methotrexate. The other change is that we are now giving Julia Methotrexate in pill form, instead of the liquid. It was getting to be such high drama every time she had to take it that I asked for this change. She has to take 8 2.5mg tablets, but this is a lot easier than the liquid was.
Sunday, August 30
We had a nice, relaxing day at home today. Julia even had a neighbor friend over for several hours this afternoon to play. Her appetite was noticibly higher today, she kept asking for snacks and for seconds at meal time. We had to suggest fruit or veggies instead of bigger portions or other snacks.
Monday, August 31
Dr. A.W. called today to give me Julia's Aldolase result: 5.2, which is well within normal. She also tried to be reassuring about Julia's progress, and she seemed very confident that we are still on the right track to treat this.
Back to July
Forward to September