Back to August
Forward to October
Wednesday, September 2
This is Julia's first day of second grade. As usual for the first day of school, there was a big fiasco with the bus schedule, and the bus came very late. So late, in fact, that we drove her to school instead of waiting for it. They were supposed to straighten out the bus situation before the end of the school day and let the kids know what bus to get on, but they told Julia the wrong bus. She did eventually get on the correct bus, but after she got home, she was very upset and wouldn't talk about anything else about school.
Thursday, September 3
Bus matters largely fixed today, just running a bit late. I was home from work sick with a cold, and during the day I make a trip to Julia's school to drop off some supplies for the art teacher (we'd been saving cardboard tubes, foam trays, and the like all summer - we had 3 trash bags full!). While I was there, I happened to see Julia in the hall on the way to lunch and I said Hi. The school nurse, Mrs. M., pulled me aside to ask about Julia's JDMS. We talked about the setback we're now dealing with, and I also pointed her to this diary (Hi Mrs. M.! Don't forget to send me an email!).
Julia had a small bout with diarrhea today after school. Not sure what's causing this - last time, it was too much milk, but she's been limiting herself to 3 glasses a day.
Saturday, September 5
It was a gorgeous day today, and we went for a "hike", more of a guided tour, really. We went to nearby Purgatory Chasm State Reservation. We were planning to see an animal tracking tour, but that was really scheduled for another day. Instead, we took a "trivia" tour where we heard various stories and trivia about the park. It was a lot of fun, and we got an unexpected bonus. There was a hiker who decided to try to climb a vertical rock face without a permit or any equipment. Our tour guide spotted this guy, and we stopped the tour while we watched some other workers and a group of real climbers (with ropes and equipment) help him get down. The wall he was attempting to climb is very dangerous, and others have been hurt climbing there. After they helped get him down, they wrote him a fine for climbing without a permit.
Julia had another diarrhea attack after we got home. She sat there for what seemed to me like half an hour. We haven't changed her diet in any way. I hope we can figure out what's causing this.
We almost forgot to give Julia her Methotrexate today. I remembered right as we were putting her to bed (rather late), and she actually chose to take the liquid form instead of the pills. She knows is takes her several minutes to get through all those pills, and she was tired. Taking the liquid was undramatic. for a change.
Sunday, September 6
We took a road trip (almost 2 hours) to visit relatives today. Julia slept for more than an hour on the ride down - she was up rather late last night, and we had to get up on time this morning to get to church.
We had to deal with Julia's diarrhea again today. It was fairly minor, but this trend (3 out of 4 days) is upsetting. If this happens again tomorrow, I will be calling the doctor.
Monday, September 7
Happy labor day! Quiet day for us; we had some relatives over for burgers & dogs. That's about all we did. Feels nice to do nothing for a change.
Julia's rash seems to be doing a little better. She also feels good. No more diarrhea, must've been a touch of a flu or something.
Thursday, September 10
Julia went in for her blood test today. Instead of going in to Boston, we went to our regular local doctor's office, which has both a pediatric section, and an adult medicine section. All our primary doctors work here. Julia's mom took her in, after putting the EMLA creme on her arm first. Julia literally didn't feel a thing, and didn't even whimper this time. We are hoping for the best, but we don't want to be let down by bad or mediocre results, so our hope is tempered a bit.
Friday, September 11
Dr. A.W. (bless her!) called us this evening to let us know that Julia's blood test results are in - and they're great!! She said that the aggressive drug treatment worked exactly like it's supposed to, knocking down the recurrence before it gets serious. We're going to take two steps at once, and move to once Prednisone dose a day starting tomorrow, and reducing the dose by 2.5mg per day every week, also starting tomorrow with a 27.5mg dose. Woo Hoo! Now, they don't make half-gram Prednisone tablets, but she did say we should split the 5mg pills and she can take half of one when we need a fractional dose like that. Splitting the pills is easy, but the half pills go flying across the room if I'm not careful.
We also have her CBC results: White Count 8, Hematocrit 41.1, Platelet Count 360 and Sedimentation Rate 7. All these results are normal. We don't have the aldolase test results, as usual; apparently that takes a few days.
We immediately told Julia, and she seemed less than enthusiastic. Her mood has been terrible since we went to 30mg of Prednisone. Her mom says it's like having a 7 year old with PMS.
Saturday, September 12
I'm really glad that we're going to be able to reduce the Prednisone. Today, we went shopping for a few things around the house, and ended up at a curtain store. Julia sat down on a low shelf and just started bawling. I held her and tried to soothe her, but she was inconsolable. She just sobbed for fifteen minutes. She said that some of the kids on her school bus stare at her rash, and a couple have asked what that is on her face. She tries to explain to them, but they won't hear it.
She said she was mad because she has JDMS. She wants to know why she has to have it. The way those kids on the bus treated hed made her feel sad. I told her that we loved her, and it was OK to have these feelings, and that we sometimes can't know why God gives us the situations he gives us. I don't know if that explanation is good enough for a seven and a half year old, but it was the best I could do.
She just broke my heart.
|Current Drug Dose:
||Folic Acid: 1mg/day
Wednesday, September 16
Wednesdays are going to be Julia's most challenging days again this year. Her first day of gym class (this school year) was today. It went well; she said that they played "Jail Ball" and her team won. Today is also Julia's first day of dance class for the season. Again, it went well. She didn't have any trouble keeping up with the other kids at either activity.
Saturday, September 19
Julia's Prednisone dose drops to 25mg today. We went to a huge craft fair today. It was a long drive, but the weather was beautiful and Julia got lots of loot, namely, clothes for her two American Girl dolls.
|Current Drug Dose:
||Folic Acid: 1mg/day
Thursday, September 24
Tonight and the past couple of nights, Julia has been complaining of pain, soreness really, in her lower back. It's not enough for her to curtail her activites (she had gym and dance again yesterday), but she says it keeps her from falling asleep. We gave her a heating pad to sleep on; we turn it off when we go to bed so she doesn't have it on all night. Not sure what this is all about, but we'll be sure to ask the doctors next week.
Saturday, September 26
Julia's Prednisone dose drops to 22.5mg today. Today, Julia went to a birthday party for one of her classmates. It was a pool party. Julia just loves the pool. and she had a great time. Her rash always seems to look worse after she goes swimming, and today was no exception. Her face looked especially bad. I have to say that in general her rash has been looking better the past week or two.
While waiting for the pool party to break up, I was chatting with some of the other parents. Julia's JDMS came up (no one can remember the name, of course :), and talking about it, which is utterly second nature to me now, clearly makes most of the other parents uncomfortable. We were talking about this phenomenon, and I believe that that uncomfortable feeling comes from them thinking what they'd feel like if it happened to their child.
We have friends who had a little boy, actually one of Julia's closest friends at the time, with a rare disease. He ultimately died from complications following a bone marrow transplant. I certainly remember feeling uncomfortable when they would talk about his symptoms, his medication, etc. Looking back, though, it seems obvious to me that being close to that family was preparation for Julia's disease. Whether we wanted to or not, we thought about how we'd react if Julia were similarly sick. That helped us to be ready to deal with JDMS, albeit not as serious a disease.
|Current Drug Dose:
||Folic Acid: 1mg/day
Sunday, September 27
Another day, another pool party. Today, it was just like the one back in March, sponsored by the Arthritis Foundation local office. Julia has a good time, splashing around in the theraputic pool (warm water, no deep end). She was the only JDMS kid there; in fact, all the other kids (aside from siblings and friends) were JRA (Juvenile Rheumatoid Arthritis) patients. There is much in common, such as the use of Prednisone and Methotrexate, and the variablility from patient to patient. There are also many differences. The symptoms are different, some of the treatment are different. Still, it's good to talk about it.
Tuesday, September 29
We had our latest visit to Children's Hospital today. It was fairly routine,
Julia's weight is 33.4 kg, or 73.6 pounds, a gain of only 1 pound, which is great considering her Prednisone dose and her appetite lately. Her height is exactly the same at 125 cm/49". Her blood pressure was 129/72, about the same as last time.
Our appointment was at the end of the day, and Dr. S. was soon to be off to celebrate the jewish holiday Yom Kippur, so we saw him first for a change. He checked her strength, and said that everything was normal (or better!) except for her neck muscles, which are barely less than 100%. This is not a cause for concern. Next, we talked about the "flare-up" we had. We first talked about Julia's rash and the need to provide extra protection, up to the possibility of using a sunblock (like Zinc Oxide or Titanium Dioxide) instead of just a sunscreen.
We explained that we're using SPF 45 sunscreen every day, no exceptions, and all her caregivers have explicit instructions to reapply it if she's going to be outside. He said that sometimes that that's not enough, and we have to consider a hat or the sunblock, or even keeping her out of the sun. He then said that it's most likely that sun exposure actually caused her recent flare-up. That's something we hadn't heard before; we'd only heard that both JDMS and the medication make her skin more sensitive to the sun, but not that exposure could cause the disease to increase activity. We're lucky that the season is making excessive sun exposure less and less likely, but we will now be more dilligent in protecting Julia from the sun.
Dr. A.W then came in after Dr. S. was done. This visit was very routine, except we talked about the flare-up with her rash. We talked for a long time about how Julia is dealing with the kids on the school bus giving her a hard time about her rash. She also asked Julia a lot of questions about how she's feeling, and so on. She asked about her Saturday tiredness, which is now gone since we moved the Methotrexate dose the afternoon, and about her mouth soreness, which is also gone since we started her on the Folic Acid supplement.
She also wants to increase Julia's Methotrexate dose by 1 or 2 pills (2.5 of 5 mg) depending on the results of the blood work we had done today. If the results are good, go to 22.5mg per week; if they're any less than good, go to 25mg. She said that this is still not a toxic dose, and we are monitoring her liver function, so we'll see if any bad side effects are occurring very quickly. The reason for this is to help prevent another flare up as we continue to taper the Prednisone dose. We're going to continue to taper at the 2.5mg/week rate until we see the doctors again in a month or so.
Dr. S. mentioned that he'd heard about this diary from another rheumatologist. he even said that they refer all their new JDMS patients to it for the information. Cool! He's read it, and said he planned to use it with his medical students as a tool to compare what was in Julia's medical notes that they keep, versus what I interpreted the information to be. I'm flattered! Dr. A.W. said she's also briefly seen it, and had heard that there were some pictures of Julia online. I also collected both doctors' email addresses, you never know when that'll come in handy. I sent Dr. A.W. an email pointing her to Julia's home page where the pictures are.
This was a somewhat trying visit to the Hospital. It was at the end of the day, and we didn't finish with the doctors until after 5:00. The blood bank was already closed, and we had to wait for well over half an hour at the after-hours blood drawing center. By the time we got out of there, we were all tired and hungry. Naturally, then, there was an accident on the highway that made us take an extra 20+ minutes to get out of the city. We did have a nice late dinner at Legal Sea Food before going home.
Back to August
Forward to October