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Saturday, January 1

Happy New Year everyone! While it is then end of the 1900s, a significant event in itself, it is NOT the end of the decade, century, or millenium, despite what you might have heard about a thousand times on TV last night. That happy occasion takes place in a year. Not everyone agress with this, but there it is.

Thankfully, the much-talked-about Year 2000 ("Y2K") problem turned out to be not much of a problem at all. The MAA BBS started displaying the date "19100", but most problems were not any more serious than that. Both my wife and I were on call from our respective companies in case there were any problems. We're very happy at how boring it was!

Thursday, January 6

Julia got her Methotrexate shot this morning. We almost forgot about it; good thing I have an event set up in my Palm III to sound an alarm each Thursday morning. This shot was the best ever. Julia didn't have any pain to speak of, just a bit of discomfort. The injection site closed up by itself so well that she didn't even need a spot Band-Aid for it. It was over in about 30 seconds.

Friday, January 7

This morning, just before school started, Julia had a fall. She said she was bumped from behind, and her shoes were not tied very tightly; she tripped as one of her shoes came off and she went down hard. She first landed on her right elbow, and scraped it badly even through a shirt and her winter coat. Mom said that her shirt was soaked through with blood at the elbow.

The worst of it was she landed on her right arm near the shoulder. She went to the nurse's office to get ti checked out. They iced it and called us.

We were both worried right away about the possibility of a fracture. Julis has been taking Prednisone nearly continuously for almost 2 years now, and one side effect if taking it is bone mass loss, which can lead to increased succeptability to fractures. Even though it didn't look too bad, we decided to take her to the doctor.

Julia's mom took her. The doctor poked and prodded her. She said that she didn't think it was a fracture; she would have seen Julia complain about a lot more pain if it were. They have an X-Ray machine in the office, but we'd rather not expose Julia to any radiation if it isn't necessary. The diagnosis is a deep bruise in Julia's tricep muscle. It should feel about the same tomorrow, and start getting better after that. If it doesn't start getting better by the end of the weekend, we will take her in to get an X-Ray.

In the meantime, we can expect that she will be in some pain today and about the same level of pain tomorrow. We can give her Acetamenophen of Ibuprofen for the pain. We can also use cold packs, heating pads, and whirlpool baths to help her feel better. She is also encouraged to gently move the arm to keep it from getting too stiff, and to flex the elbow to keep it from healing badly.

One concern was that this is a sign of returning muscle weakness. I don't think so; between the loose shoes and getting bumped from behind, this was probably just an accident. Her strength seems very good aside from the injury, and she doesn't seem unusually fatigued or irritable (sure signs in her previous flare-ups). We will keep an eye on things, just in case.

Saturday, January 8

Julia's arm does seem a little better this morning already. She was writing and reading her email today, and she wasn't complaining about it hurting too much. Also, she slept pretty well after taking an Ibuprofen tablet at bedtime. Looks pretty good so far.

Sunday, January 9

Julia's right arm is in somewhat less pain today, which is good. However, her range of motion and strength in that are are still way below normal. She is strongly favoring that arm with almost everything she does. She is still recovering, so we'll try to be patient here.

Monday, January 10

Well, Julia's arm is in a lot less pain - she doesn't even need any pain medication any more, not even to sleep - but she still has not regained full strength in her arm. She has some strength and motion in the arm; she can write and practice her keyboard, but she struggles with everyday things like putting on a coat, washing her hair, and fastening her seat belt. It's weird, it's like she has no strength in the upper arm. It's also weird that there's no bruising or apparent swelling in the arm, it looks perfectly normal.

I've heard that deep bruises can do this, leave a muscle weakened for a while. In fact, I've had it happen to me, now that I think about it. When I've played basketball, I had a couple of incidents where I sustained a hard hit to my arm or leg, and it was noticibly weaker for a few days. I always fully recovered, so I guess I'm willing to be patient with Julia's injury. However, if it doesn't start to get better within the next couple of days, we'll take her in to see the doctor again.

Tuesday, January 11

Julia's arm seems to be doing a little bit better today. That arm muscle is still very weak, but I think there's an improvement from yesterday. Julia's day care provider, who sees Julia a couple of days a week after school, has been very diligent in getting Julia to use that arm. That's been a great help.

I was chatting last night mentioned Julia's injury and how long it seemed to be taking to heal. Everyone immediately jumped in and reminded me that Prednisone may make injuries and illnesses take longer to heal. I had forgotten all about this side effect of Prednisone because, for the most part aside from JDMS, Julia has been very healthy and injury free for most of the past year. I guess we'll just have to take this slowly and be patient in letting her heal.

Wednesday, January 12

A little more improvement in Julia's arm today, but she decided she didn't want to go to dance class anyway. She was feeling tired, the scrape on her elbow was itching and it woke her up during the night.

My wife & I are handling Julia's recovery from this very differently. I prefer to be hands-off, encourage Julia to use her arm, but not push her. I figure that even if she'd broken it, it would be immobile for several weeks, but she's recover fully. Given that Prednisone is going to slow the healing process anyway, I believe we should be patient. Of course, if she stops improving or gets worse, medical intervention would be necessary.

Julia's mom is being a lot more proactive. She is pushing Julia to use the injured arm at every turn, taking time to make her exercise it, and is generally in her face with the problem. She's afraid that Julia may have long-term problems if she doesn't push herself. She also fears that Julia is babying the arm and not pushing herself hard enough to help it heal.

I don't know who's right; maybe we both are, or maybe we're both wrong, but at I think it's healthy that we have different approaches to this problem.

Thursday, January 13

Well, it's been 303 days since our last snowfall here in the Boston area, a new record, and we finally got ourselves a snowstorm. Nothing major, but we did end up with 6 or 7 inches of white stuff at our house, enough to justify using the snow blower, which made quick work of the worst of it.

Julia was absolutely miserable this morning. She got her Methotrexate shot, and we were running very late in the morning despite us wanting to leave early because of the weather. By the end of the day, the reason became clear - she is coming down with a cold. She was feeling run down and congested and was generally in a bad mood all day. That's always a sure sign to us that she's sick.

On the plus side, the arm seems to be getting more and more mobility and strength each day.

Friday, January 14

Julia was feeling better. She was less congested, and in a better mood after getting a good night's sleep. She went to school as normal.

Tuesday, January 18

They say a picture is worth a thousand words. Here's 4:

Yes, this means Julia's arm is broken. That's why it's been taking so long to "heal". But I'm getting ahead of myself.

We had a clinic appointment at Children's Hospital today, our first in almost 7 months. We had hoped it would be routine, but that was not to be. Still, it was not as bad as it could have been.

We got to the hospital, registered, went up to the clinic to collect our lab orders, went back down to phlebotomy to get blood drawn (Julia was a trooper!), then back up to clinic to our appointment. They had us cooling our heels for quite a while, which is understandable at the end of the day. Dr A.W. came in and made some small talk about travel, holidays, and school. She also raved about the mice that Julia rubber stamped for her. We actually talked about mice for quite a while, including mice in the movies - The Green Mile and Stuart Little, to be specific.

Then we got down to the exam. Dr. A.W. asked us about how Julia has been doing, her strength, and so on. Then she ran Julia through the usual battery of strength tests. We talked about Julia's recent cold, and how she always seems to get sick the week before her appointments. We also talked about Julia's arm injury. Julia's been having no pain with it, and the clinical exam she gave Julia didn't seem to indicate a serious problem.

A few minutes later, Dr. S. came in with a medical student, who he said had recently graduated from medical school in India and was in for an "observancy", apparently because she couldn't secure a residency. Dr. S. also showed off his Palm III, although he hadn't set it up to beam me his business card yet. He'd apparently just gotten it, so maybe next time.

He had Dr. A.W. present her findings about Julia, then he went through a clinical exam himself. Then he sat down and talked to us. He said her rash has not improved as he would like, and seems worse to him since the infusions have stopped. He wants to change her medication, taking her off of Plaquenil, and putting her on something new called Atabrine (Quinacrine hydrochloride). Atabrine is a relative of Plaquenil; it's also an anti-malarial that's been in use for decades. It's been in use in Europe for rheumatic diseases for a long time, and was approved for use in the US about 5 years ago. It's not widely prescribed yet, and may be difficult for us to find. He also needs to check her dose on this drug. He has prescribed it to one other of his patients. It's not as potentially harmful to the eyes, but has a possible side effect of turning the skin yellow, and may cause gastro-intestinal distress. He wrote us a prescription for 100mg 2X a day, but said to start at 1X 100mg/day unless he tells us otherwise.

We explained to Dr. S. about Julia's arm injury. He examined it carefully; he was initially concerned about the weakness that the injury caused. He didn't think it was broken, either; he said he thought it was either ligament damage or a bruise to the ligament connected the tricep to the shoulder, or a rotator cuff injury. He's not a specialist here, so he referred us to radiology to have it x-rayed just to be safe. The expectation was that the x-ray would be clear, and they even set us up to see a sports medicine orthopedic specialist. If there was a problem, Dr. A.W. would get paged and we'd get it taken care of.

What is it they say about the best laid plans of mice and men? We went to radiology. They set us up in a very high-tech xray machine. It's all automated; they put in the parameters about the patient (height, weight, age, area to be x-rayed), and the computer calculated the minimal x-ray dose to be used. Very cool. They took 2 x-rays, one with Julia's right hand at her side, palm up; the other with her right hand across her chest. I asked for, and received, copies of the x-rays. See the results above.

After a brief wait, a radiologist came out and gave us the bad news: the upper arm bone, the humerus, has a fracture near the top of the bone. It's pretty obvious, if you know what to look for in the x-ray. Off we went to clinic again. Dr.S. and Dr. A.W. both said it was an obvious fracture, and Dr. S. even said that Julia must have a high tolerance for pain.

Now that we had a diagnosis, what to do? We were supposed to go to the emergency room, have an attending physician look at it, get an orthopedic consultation, and get evaluation and treatment. Unfortunately, this is influenza season and evening is always very busy in the E.R. Dr. A.W. said we'd probably be 6 to 8 hours in the E.R. before we were done. Ouch.

Dr.S. checked who the orthopedic doctor on call was, and he knew him, a Dr.M. He paged Dr.M. and explained the case. We agreed to meet him at radiology, and he would have a look the x-rays and evaluate them for us without us having to go through the E.R. process. Well, it went smooth as silk. Dr.S., Julia, and I met Dr.M. at radiology. He looked at the films for about 10 seconds, then said it was not too serious. Julia would need to have the right arm in a sling for a couple of weeks, but should be okay after that. He walked us to the E.R. supply room, grabbed us a sling, and we were on our way. Dr.M. wanted us to call his office to let him if there were any problems, and if not to call in 2 weeks to let him know how she's doing.

Obviously, this could have been a lot worse. It's not very serious, and we got out of there at a decent hour. Thanks big time, Dr.S. and Dr.M.!

I don't know if I can express the guilt and anguish we felt when we learned Julia's arm was broken. We've been pushing her to move it and exercise it for a week and a half! It started to sink in after we got home and gave the news to Julia's mom. I mean, I know we were acting on the best information we had at the time, and we had the very best of intentions, but it still hurts to know what we put her through. Sorry, Julia!

	Aldolase	CK	LDH	AST	ALT
3/30/99 Test:	10.2	293	290	47	36
4/27/99 Test:	11.4	413	348	68	69
5/25/99 Test:	12.4	544	347	59	42
6/22/99 Test:	15.7	943	393	82	59
6/24/99 Test:	8.6	285	318	45	46
7/1/99 Test:	10.6	432	303	49	42
7/8/99 Test:	8.5	284	265	37	23
7/15/99 Test:	Not Done	330	290	42	23
7/22/99 Test:	3.0	292	392	53	30
8/5/99 Test:	7.3	161	283	30	25
8/19/99 Test:	7.8	167	291	30	19
9/1/99 Test:	7.7	149	274	30	24
9/14/99 Test:	5.5	119	268	26	20
10/5/99 Test:	7.5	132	271	31	22
10/26/99 Test:	7.5	105	275	28	20
11/16/99 Test:	8.3	113	273	30	27
12/14/99 Test:	6.3	88	249	24	21
1/18/00 Test:	Not Yet	72	247	23	20
Normal Range:	3.0-16.0	4-150	110-295	10-34	6-59

Wednesday, January 19

We dropped off Julia's new prescription for Atabrine today. They didn't have it on hand, but said they could order it and it would be in by the end of the day tomorrow.

Dr. A.W. emailed us Julia's lab numbers, and she said she thinks they are great! All the numbers we have so far are down.

Julia went to Dance class, wearing her sling. The sling chafed her neck, but besides that it worked very well. She said the other kids were jealous because they still have to use their arms while Julia didn't.

Thursday, January 20

Today was interesting. Another Thursday, another snow storm. Not as bad as last week's.

The bad news is that the pharmacy could not get any Atabrine, neither brand name nor generic equivalent. They had none on hand, their regular supplier said that it was no longer being manufactured, and none of the other drug stores in the area had any, either. They offered to call or page Dr.S. to either get a different medicine prescribed, or give us a clue where we could get some. Sigh.

I picked Julia up at the sitter's at the end of the day, and she was complaining that her eyes hurt, and she had a headache. Her eyelids were all red, and there was mucousy discharge coming from both eyes. She was plainly not feeling well.

By the end of the evening, it was clear that Julia had a head cold. She quickly developed congestion and was miserable by bedtime. One Tylenol an hour or so before bed helped her with the eye pain and the headache.

Friday, January 21

Julia stayed home from school today, and she's going to have to miss her keyboard lesson today. She had a pretty bad head cold. She's pretty congested, and is also sneezing. Her eyes are still bothering her. First thing in the morning, she had a slight fever of 99.1°; by mid-morning, it was up to 100.1°. We may have to give her a "stress dose" of Prednisone if her temp gets over 101°.

Saturday, January 22

Looks like another lay-low weekend. After I gave blood and getting our car inspected, we went out and ran a few errands. Julia seemed better, but was still running a low-grade fever, in the 99° range. By the end of the day, she was wiped out and felt lousy. As soon as we put her in bed, she started coughing and it woke her us several times during the night.

I am having no luck whatsoever getting ahold of any Atabrine. I checked with every major drug store in town, and no one can even order any.

Monday, January 24

Julia work up feeling a little better than yesterday, but still running a low fever. She stayed home from again school today. We've been going to school each day to get her classwork and homework assignments, so we've got basically all her books at home.

She has said that her arm is feeling a lot better after almost a week in a sling, and she's anxious to start using it again. We're kind of apprehensive about that now; we're going to keep it quiet for another week before we start pushing it again.

Tuesday, January 25

A surprise snow storm came up the east coast of the US today and cancelled school for Julia, giving her a 5-day weekend. She was feeling better; she slept well, and her temperature are close to normal this morning. She did manage to get some play time in the snow today, as well as get caught up on her school work.

Tonight, we had a chat and most everyone had Voice Chat enabled. This let us hear each other's voices. It's a very different experience than the regular text chat.

Wednesday, January 26

Julia is feeling much better this morning, and her temperature is down to a nice, normal 98.2°. The weather is still playing havoc with the area, however; school opening is delayed an hour this morning, and she has a 20+ pound backpack full of books to get to school. Fortunately, we did arrange for her to get a ride to school instead of having to deal with it on the bus.

She even went to dance today, and did pretty well, although the day seemed to leave her exhausted. At bedtime, she had a good cry, as she does occasionally. She just has to get it out of her system, then she feels better again.

Thursday, January 27

Julia slept well last night, and woke up in a very good mood. She actually came to me looking for her Methotrexate shot, and it went without a hitch.

After school, Julia casually mentioned how her left ear has seemed blocked to her, and she can't hear well in that ear. Turns out that this has been going on for a week, since she first showed signs of a cold. We clued her in that she needs to tell us when that happens.

We called the pediatrician's office after-hours care. I explained to them about the ear, and they said they wanted to see her. We drove over and saw a nurse practitioner (NP). She said there was no wax in the ear canal, but she could see fluid behind the eardrum.

She then grabbed a model of the human ear. She said that frequently, fluid will collect behind the eardrum when kids get a cold. It's not usually dangerous, and it clears itself up withing a week or two. She also said that decongestants won't help this; a study was done a couple of years ago that discounted that previously widely-held belief. All we should do a wait. It should gradually get better within 4-5 days. If it doesn't get better by then, or if there's any pain, we should have it looked at again to make sure there's no infection.

We wrapped up with the NP asking about Julia's arm. Julia told the story, and the NP said that they used to cast breaks like that by casting the arm up at shoulder height sticking straight out from the body, with the cast wrapping around the chest and a support from the elbow to the side of the body to hold the arm up. Imagine trying to get a coat on over that! She also said that kids tend to heal quickly; I added, "not when they're on Prednisone", and she agreed with that.

Saturday, January 29

Julia and I went to the Boston Museum of Science for the afternoon, while Mom went to a show with a friend. The museum had a couple of cool new exhibits, one about reptiles, and the other a programmable virtual fish tank, and we took in a show at the planetarium. Naturally, we got lost trying to get around the city, but it was a fun time.

Julia's arm is doing a lot better. She's cheating with it more and more, and it's giving her no discomfort at all. Her cold is hanging on, though. She has some coughing fits, then she's okay for hours.

Monday, January 31

We heard back from Dr. A.W; our calcium supplementation system is fine. We have Julia taking one Tums tablet at each meal, plus the A & D supplement with the rest of her meds. That gives her 900mg of supplemental calcium each day,

The doctor also approved us going to 9mg/day of Prednisone. Since they only make 1mg and 5mg tablets, that means Julia almost doubles the number of pills she takes each day, while actually reducing her dose. Ironic.

We do have a line on a local pharmacist who can make us up Quinacrine from compound. This looks like a promising strategy, we just have to make sure we can get a prescription to them.

Finally, we did some tests on Julia's arm. I want to have something to report to the doctor when I call with a status report tomorrow. She has a full range of motion; she can move her arm from her hip, straight out to the side, and over her head, and also in a full circle with ehr arm going from down. to front, to back, to down again. The strength seems to be good and she showed no sign of trouble (except when her shoulder cracked as she moved it and gave us a heart attack).

Current Drug Dose:

Prednisone: 9mg/day

Plaquenil: 200mg/day

Folic Acid: 1mg/day

Calcium: 900mg/day

Methotrexate: 30mg/week

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