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Saturday, July 1

Today, we find ourselves in King of Prussia, PA at the Valley Forge Convention Center for a regional Worldwide Marriage Encounter convention.

The ride down yesterday, in the 4th of July holiday traffic, was slow but uneventful, and Julia entertained herself quite well with reading and her personal stereo. After we arrived, we shared a nice meal with friends and then participated in the convention's opening ceremony. The three of us carried in the banner for our area!

After morning Mass, Julia spent most of the day with a group of other kids in the same age range. She seemed a little bored, as most of the activites for her group were geared for the younger kids.

In the evening, all the couples there renewed their wedding vows, then we had a "wedding reception" complete with a sit-down dinner and dancing.

Sunday, July 2

This morning, we again celebrated Mass with the convention group. The celebrant and homilist was Anthony Cardinal Bevilacqua, Cardinal of the Archdiocese of Philadelphia. The Mass was very inspiring.

Following Mass, we has an uneventful ride home without any significant traffic, during which Julia and her mom slept a lot of the way. This was actually a problem - Julia couldn't fall asleep at bedtime and was up until almost midnight. Fortunately, we took tomorrow off as a vacation day so we'd have an extra-long weekend.

Monday, July 3

This was a day of recovery from our weekend. We had errands to run, groceries to buy, and laundry to do. We did take a movie break, and we saw The Perfect Storm. It's intense, and very well done.

Julia was complaining about her throat hurting a little tonight at bedtime. We had a look in there, and the back of her mouth seems to be covered with a white substance. Never seen that before, and not sure what to make of it. We'll keep an eye on it.

Wednesday, July 5

Julia (finally!) seems to have a loose tooth. First one in years, literally. It's on the bottom on her left side. This is a good sign!

I saw in the local paper today that Childern's Hospital in Boston was once again named the best in the United States.

Thursday, July 6

Today, we brought Julia in to her regular pediatrician, Dr. L., for a checkup. This would ordinarily be redundant, given all the doctors visits she gets over at Children's, but her school requires a physical before entering the 4th grade (it may be state law, I'm not sure). In any case, she hasn't seen him for 2 years, and it's a good to keep him up to date with her history.

The exam was very routine - height & weight (51.25" and 80.0 lbs, respectively), BP, temp, etc. by a nurse. After a while, Dr. L. came in. We haven't seen him for a while, so we took a while to get caught up. We talked about Julia's current condition with JDMS and what meds she's taking. We covered some of the high (low?) points from the past year or so (flare, hospitalization, infusions, broken arm, etc). Apparently, Children's Hospital is very good about forwarding updates to keep Julia's medical record up to date, which I didn't know was happening. It's good to know that.

As usual, he quizzed Julia about nutrition, exercise, and safety. He also asked about eye doctor visits, dental health, her progress in school, and about her friends. Julia gave all the right answers.

We did ask about Prednisone affecting tooth growth - he didn't know. We also asked about the "poison ivy" that Julia has seemed to get. She gets a small patch of a local rash, then a few days later, her whole body breaks out. This hasn't happened lately, but it has happend a few times. This turns out to be something called Pityriasis Rosea, a rash apparently caused by a virus. This is not a dangerous condition, and symptons can be relieved with Benadryl and topical treatment. Dr. L. even pulled out a pediatric dermatology textbook and showed us pictures. Yup, that's it! It's good to finally know what that is.

Finally, he gave Julia a physical exam. He found nothing interesting until he looked into her mouth. He noticed the whitish stuff in the back of her mouth we'd seen a few days ago, and right away diagnosed Thrush. This is an opportunistic fungal infection of the mouth that is common in people with compromised immune systems, such as (surprise!) people taking Prednisone. I should have known this myself - I had read many times that Thrush is a common side effect in long-term Prednisone users.

We will be treating it with a "swish and swallow" medication called Nystatin, which is a common and effective treatment for Thrush. It should work within a few days, and we have to continue using it for 3 days after the infection is completely gone. Just what we need, another prescription.

Friday, July 7

We picked up our prescription for Nystatin today and Julia started using it. It's a yellowish liquid that Julia says tastes a little like bananas. She has to use it 4 times a day, after each meal and at bedtime.

According to the drug information sheet, as well as the web sites I've found, this stuff works vrey well when used as directed. The possible side effects are all gastro-intestinal, including diarrhea, nausea, gas, or vomiting. It can also affect the taste of foods, which is apparently why taking it after meals is recommended. There are not any interactions with the other meds she's taking.

She has to take a teaspoonful of the stuff in her mouth, then swish it around in there for as long as possible. Then she's supposed to gargle it and swallow the remainder. She doesn't really like the taste, but it's not so bad that she can't stand it.

Saturday, July 8

Julia and her mom took a ride into Children's Hospital to get blood taken. They always give us the option of getting it done locally, but Boston is just not that far to drive, and it's better to get it done by the same lab each time. They also went out to lunch and hit the mall on the way. Lab results will be posted as soon as I get them.

Test Date Aldolase CK LDH AST ALT vW F8
11/16/99 8.3 113 273 30 27 195
12/14/99 6.3 88 249 24 21 135
1/18/00 6.5 72 247 23 20 168
2/29/00 6.0 74 230 24 32 190
3/18/00 5.2 54 213 25 25 148
4/18/00 3.7 50 190 22 13 145
6/6/00 5.6 67 204 23 21 148
7/8/00 6.0 72 248 28 25 170
Normal Range: 3.0-16.0 4-150 110-295 10-34 6-30 160

Sunday, July 9

Julia had a friend on hers over to play today. They are like two peas in a pod, and keep each other occupied very well.

We had a look at Julia's throat tonight and it looks like the Thrush white stuff is just about gone. Good stuff. We'll keep checking it each night, and when it looks like it's completely cleared, we'll start the three day countdown to when she can stop taking Nystatin.

Monday, July 10

We got an email from Dr. S. (remember, Dr. A.W. is in an intensive class this summer) saying that all Julia's numbers are normal. The actual numbers are ALT=25, AST=28, CK=72, sed rate=10, albumin=4.2, hct=38.5%, and WBC=4.45. We are still awaiting the Aldolase and von Willebrands tests. I'll post the pending results as soon as I get them.

Tuesday, July 11

We checked Julia's throat tonight and it looks completely clear. That means we have to give her Nystatin for 3 more days. Just to be safe, we'll keep her taking it until Saturday night, an extra day.

Thursday, July 13

We got the rest of the numbers from Dr. S. today. Her aldolase was 6.0 - great! - but her Von Willebrands was 170, which is both higher than last time, and above the normal level of 160. [I've add a column to the lab test chart above to include the vW F8 test] He recommended that we keep her meds at the same level for now and retest in 3-4 weeks.

This is disappointing for us. We were hoping that we could continue our tapering of Prednisone, but it's on hold for a while. We were talking about why this is happening, and it may be the sun. Julia has been swimming almost every day, and her face (especially her nose and cheeks) have been red. This started last week, just a couple of days before she got tested.

Monday, July 17

Julia has a few spots on her arms and legs that look a lot like poison ivy. They are smallish patches, just a square inch or two each. They are not bothering Julia too much, just a bit of itching, so we put some Calamine lotion on them.

We've also started Julia using Zinc Oxide creme on her face when she's going to be out swimming or whatever. She doesn't like it because it's opaque and makes her skin white, but it seems to work. She spent several hours out in the sun today and her face looks fine.

Wednesday, July 19

True to form, it looks like Julia has broken out in a rash all over her body. It looks a lot like the Pityriasis Rosea that we talked about with Julia's pediatrician a couple of weeks ago - small bumps pretty much everywhere. We gave her Benadryl, which made her very tired, and some stronger over-the-counter lotion. She gets a little antsy between Benadryl doses, but we don't want to give her any more than necessary.

Thursday, July 20

After just a day plus of treating Julia's rash, it looks a lot better. In fact, it's almost gone. The itching is not bothering her at all, and she didn't need to take a Benadryl all day today.

Friday, July 21 through Sunday, July 23

We spent this weekend away from home camping. This is the same group of families and the same campground we stayed at 2 years ago. Lest anyone be concerned, this is not roughing it - the camp sites have electricity and running water, we brought enough food to feed an army, and the campground has plenty of amenities to keep you comfortable.

The biggest difference this year was the weather. On Friday night (actually early Saturday morning), we had some spectacular thunderstorms. I mean, it absolutely poured for a good couple of hours, and the lightning and thunder were relentless. No one slept very well that night, and there was a lot of drying off going on the next day.

Julia seems to have developed an affinity for baseball. In the past couple of months, she's become quite the Red Sox fan, and asks me about the scores to last night's game almost every morning. This weekend, she borrowed a glove and started playing catch - with me, one or more of the other kids, or just throwing the ball onto a tarp we were using for a canopy and catching it as it rolls off. I'm going to see if we can get tickets to a Red Sox game some time soon.

However, after the storms, the weather was nice and we had a good time just relaxing. There was time to play cards, read a magazine, whatever. Stuff you *could* do at home, but wouldn't. It was a nice getaway.

Monday, July 24

Uh oh. It looks like Julia's Thrush is back. It was gone for more than a week, but tonight, Julia was complaining that her throat was hurting, so we took a look in there. Sure enough, the same whitish coating is in the back, although not as extensive as it was the first time. We have plenty of the Nystatin left, and we can refill the prescription, so we'll start on that again. She took a dose at bedtime tonight.

Friday, July 28

Julia's skin looks absolutely great this week (aside from still being on the yellow side). Of course, her regular day care, the one with the swimming pool, is on vacation this week and the weather has been pretty miserable this week, cool and cloudy when it isn't actually raining. Still, even her eyelids barely have any visible rash any more, and that's not just from her being out of the sun.

I note, with great pleasure, that this is the first summer since Julia was diagnosed that we are not having to endure a steady stream of comments from people about her rash. I certainly do not miss those feelings of anger and impatience that I felt in the past when stranges would rudely ask about her "sunburn." It's a wonderful testament to how well Julia is doing this year.

Monday, July 31

Julia's been on Nystatin for another week now, and her throat looks clear. However, it did last time, too. We've decided to keep her on it for the rest of this week, just to be safe.

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Updated August 1, 2000
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