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Wednesday, February 2
Julia is still dealing with a low-grade cold. Most of the time, she's fine, but sometimes at night, when she's trying to fall asleep or even in the middle of the night, she'll start coughing.
We're still waiting to hear back about Quniacrine.
Sunday, February 6
Julia received Sacrament of the Sick today, and also a "blessing of the throat", a recognition of the feast of St. Blaise. Julia's godparents came today to see the Sacrament, and then we went out to lunch.
Julia's cold didn't bother her tonight, but about an hour after bedtime she came down complaining that her tooth hurt, and it was keeping her up. This is something new. We gave her a Tylenol for the pain, and she went right to sleep.
Monday, February 7
I just found out today that the Myositis Association web page is now listing Julia's JDMS Diary on it's "Related Organizations" (links) page. Thanks for the link!
Tuesday, February 8
We heard from Dr. A.W. about the local pharmacy about making quinacrine for us. She said that they would make it up for us, but would require us to pay $100 up front for 60 pills, and then seek reimbursement from our insurance company. We needed to contact our insurance company and make sure that this arrangement was okay and they would reimburse us.
We called our insurance company, an HMO, and explained the situation. They said that the arrangement proposed by the pharmacy was not only in violation of their contract with the HMO, but may be illegal! They went on to say that they have been having a lot of problems with this particular pharmacy in recent months, and we should avoid them. They gave us the name and phoe number of a pharmacy in neighboring Rhode Island that would make up the drug and then ship it to us. This sounds a lot more reasonable; we gave the number to Dr. A.W., who will call them and make the arrangements.
Wednesday, February 9
Today is Julia's first day without her sling. She was pretty excited to have a normal day (complete with gym class and dance lessons). Her arm seems completely normal - she has no pain, and her range of motion and strength seem normal to us.
She did end up falling a couple of times today, both appear accidental. The were playing floor hockey in gym and someone tripped her and she fell on her knees. She didn't scrape them, but she said they are sore. She also fell during dance class. She was wearing new tap shoes that have polished metal taps on the sole at the toes and the heel, which are slippery anyway. She slipped and fell backwards and fell on her tailbone (coccyx). That was feeling a little sore, but she laid down on a heating pad after we got home and it wasn't bothering her.
Her arm is fine; she was probably favoring it a bit, which is not unexpected, but can sometimes lead to being careless about other injuries. We'll keep an eye on that tailbone, and if there are any problems we'll have it looked at.
Thursday, February 10
Another Thursday, another utterly uneventful Methotrexate injection. Either our technique has improved, or Julia is tolerating the needle stick better, or both. Not that I'm complaining...
Saturday, February 12
We celebrated Julia's birthday a few days early this year (her actual birthday is the 17th), and held her birthday party today. It was kind of different - we had the party at our local movie theatre. The provided a space, we brought cake and ice cream and had a party! The kids ate their fill, then Julia opened presents. She got a bunch of great presents that she loves.
After the party, everyone got to see the movie Snow Day. I thought it was lame, but the kids all loved it. Everyone got a soda and a popcorn to have during the show. Everyone had a great time! I did take a bunch of photos; I'll try to post a few here as soon as I can.
Monday, February 14
Happy Valentine's Day, everyone! Click here to get a special Valentine's Day card for all the readers of the Diary.
Wednesday, February 16
Well, the ordeal of trying to get our hands on some Atabrine (Quinacrine) is finally over! They delivered it to us yesterday and we started Julia on it today. We just hope that this stuff doesn't turn her skin yellow. I guess this marks the official end of the Plaquenil era.
Julia also had another fall today. She tripped on a loose carpet (one another child had tripped on earlier). She fell and has a small mark on her chin and also cut her upper lip. She got all upset, and then didn't feel like going to Dance.
|Current Drug Dose:
||Folic Acid: 1mg/day
Thursday, February 17
Happy Birthday, Julia! Our baby girl turns 9 years old today. If you have a moment, please email her a birthday greeting to email@example.com. If you fancy sending her an online birthday card, try Blue Mountain, ABC Greetings, 123 Greetings, Yahoo! Greetings, or Hallmark. Thanks!
Friday, February 18
Julia received many wonderful birthday greetings. Thanks, and Julia also says Thank You.
Saturday, February 19
Julia, a friend of hers from school and church, and I went to hockey game tonight. The Worcester Ice Cats hosted the Lowell Lock Monsters. It was a promotional deal with my company, where we got discount tickets. The girls and I had a lot of fun, and the Cats actually won!
Tuesday, February 22
We met up with another JDMS family today. It's school vacation week, so we decided to get together and do some bowling. We met up at a place about halfway between our respective homes just to get together and bowl a few frames.
This was the 2YO boy and her mom that we met last summer just a few days after they'd received their diagnosis. We got together with them, plus the boy's younger and older brother. Back then, the boy was not doing so well. Today he was doing great, doing his best to roll his ball down the lane. When he was bored with that (about 4 frames), he started running around the bowling alley, running Julia ragged in the process.
Between frames, we chatted with the mom. She's coping very well. She had some questions about the longer-term treatments and such. The boy is on Solu-Medrol infusions every 2 weeks (soon to drop to every 3 weeks, hopefully) and his numbers look very good. They see Dr. S. at Children's, same as Julia. It was a very nice time, and it was great to share with someone in person like that.
Friday, February 25
I've been paying attention to Julia's face rash this week, and it's looked okay some days, and not so good on others. It was not good today. I guess I can attribute this to the change in medication (from Plaquenil to Quniacrine), and we need to give the new stuff a chance, but it's still disheartening.
Saturday, February 26
We paid a visit to the local hospital today, but it wasn't for Julia this time. Julia's mom came down with either food poisioning or a severe stomach flu and needed IV fluids. ObJDMS: The admitting nurse took one look at Julia and said "Allergic reaction, right?". You'd think that medical professionals would have a little more sensitivity, but you'd be wrong.
Tuesday, February 29
This is the first and hopefully last Leap Day I'll ever write a JDMS update for. We went in to Children's for a visit. Julia's Mom was there for the first time in quite a while - she's been in school Tuesday nights. This visit went very well.
Dr. A.W. chatted with us and got caught up - it's been 6 weeks since our last visit. The usual questions: how's school, dance; are activities going well, and so on. She also asked about the arm, and it's fully healed. She then did an exam on Julia. She seemed very impressed by Julia's strength; Julia seemed to be 100%.
After a while, Dr. S. came in. He seemed to be in a very good mood today (not that he's ever in a bad mood). He also chatted and then checked Julia's strength, and he agreed that she seems to be doing very well. He asked Julia if there were any problems with the Quinacrine; Julia said no, and she was glad she hadn't turned yellow yet. Dr. S. said that Quinacrine is working very well on JDMS patients in Europe, and he's hopeful it will help Julia, too.
The next step is reducing the oral Prednisone. I said that we wanted to take this taper very gradually this time, that we literally don't care if it takes the rest of the year to get off it. He said that the 1mg reduction last time was not too conservative, a 10% reduction. As usual, we will check the results of today's blood work and if all is well, we'll go to 8mg/day, probably next week when the von Willebrand's and Aldolase come in. 8mg/day is the "critical dosage" for Julia's weight; practically all the side effects should go away at and below that dose because that's about the normal level of corticosteroids that the body produces naturally.
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