About Julia

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Middle to Late January, 1998

Julia had some cold symptoms (slight fever, congestion) for a few days, and a cough that persisted for a couple of weeks. The cold symptoms were minor and she didn't miss any school, and the cough was worst at bedtime and sometimes would keep her awake. Soon, she exhibited a slight rash on her face, which was the most pronounced on her upper eyelids.

Friday, February 6

The face rash has persisted for about 3 weeks now. It is not the same every day; some days it was barely noticible, other days it is very pronounced, especially around her eyes, which gave here a sick appearence even though she felt fine. The rash was also on her hands a bit now. We tried antihistamines (Benadryl), hydrocortisone cream, and various skin lotions to no effect. We took her to her regular pediatrician, Dr. L., who was thorough and did some research, and diagnosed Fifth Disease. Fifth Disease is an old name for a general rash that is triggered by a viral infection, such as the one Julia had in January. He said that Fifth Disease will usually run it's course within 28 days, and since we were not certain of the exact date of the onset of the rash, and there is no treatment for the disease or the rash itself (aside from moisturizing creams to help if the skin gets dry), we decided to wait and see for a couple of weeks.

Tuesday, March 3

The nurse at Julia's school, Mrs. M., noticed that her rash was particularly pronounced today, and Julia was also complaining that her ear hurt. By this time, the rash had taken on it's very distinctive appearance: reddish-purple in color, and located around the eyes, especially the upper eyelids (this is called "heliotrope"), the cheeks and chin, and the joints of the elbows, knuckles, knees, and ankles. The nurse called Julia's mother, who scheduled an appointment with a staff pediatrician at our health center. Dr. W. saw Julia that afternoon and diagnosed either Psoriasis (skin dryness) or Juvenile Dermatomyositis (JDMS), an auto-immune disorder that manifests itself through a very distinctive rash, and muscle weakness or pain caused by inflammation of muscle tissue. The ear pain turned out to be no problem.

Dr. W. referred us to a local dermatologist, Dr. A., who examined Julia immediately. He concurred with the diagnosis of either Psoriasis or JDMS, and referred us to a specialist at a local teaching hospital. That specialist was unavailable, so he referred us to a Dermatologist at Children's Hospital in Boston, Dr. G. Dr. A. also ordered a series of blood tests to confirm JDMS. These included muscle enzyme tests, and antibody tests.

Wednesday, March 4

Did a little online research on JDMS today. In particular, I found Sharon's Myositis Page, the Myositis Association of America (MAA), and the American Autoimmune Related Diseases Association, Inc. (AARDA). Scary stuff.

Thursday, March 5

We got a call from Dr. A., who said that some of the blood work came back. He did not give us a lot of details, but did say that Julia's muscle enzyme counts were high, which could be an indicator of JDMS.

Friday, March 6

Morning appointment with Dr. G. at Children's. He had seen several cases of JDMS, and based on the results of the blood tests and the physical exam, almost immediately confirmed JDMS. Dr. G. invited several medical students (Children's is also a teaching hospital) to examine Julia and diagnose what her condition might be [one did :], and another took photos to be used for further teaching (she promised confidentiality - the photos would not be published), since her rash was "classic" of JDMS. Next, Dr. G. referred us to the director of Rheumatology, Dr. S. We had almost a hour to kill before Dr. S. would be back from rounds, so I went to the blood donor center in the hospital to donate, and my wife & Julia went to get a snack. Of course, I get a snack after I donate, too. The timing was perfect - I arrived back just as everyone was going to find an exam room.

Dr. S. and another rheumatologist, Dr. A.W., came to see Julia. Again, based on the blood tests and their physical exam, Dr. S. made a positive diagnosis of JDMS. They were very pleased that this had been diagnosed so early in the course of the disease - he said that often JDMS is misdiagnosed and goes untreated for months, often to the point that the patient is debilitated by the muscle inflammation and resulting weakness. He explained that the blood tests showed that muscle enzymes were at elevated levels in the blood, which indicated that Julia's immune system was attacking her muscle tissue and inflaming it. In particluar, her CPK level was 659, whereas a normal level is 80-160. Also, Julia was showing a small amount of weakness in her neck muscles.

Dr. S. explained that, as an auto-immune disorder, JDMS causes the body's immune system to attack parts of the body itself, in this case the capillaries under the skin, and the muscle tissue. The rash manifests itself because those capillaries are mechanically stressed the most. The underlying mechanism is lymphocytes attacking those tissues, and the attack is often triggered by a virus in people who are genetically disposed to JDMS. There is some indication of family history of rheumatic disease - we know of 2 cases of Lupus and one of Ruematoid Arthritis, all on Julia's mom's side of the family. He also said that there are two forms of JDMS - a "pure" form, and an "overlap" form that can involve other body systems, including connective tissue. He ordered additional blood tests to help determine which form of the disease Julia has. One indicator that we may be dealing with overlap that is one blood indicator, ANA (anti-nuclear antibodies), is very high in Julia's test. We should find out next week.

JDMS is a very rare disease. Dr. S. told us that in his 20+ years of practice as a rheumatologist that he has seen only about 25 cases of JDMS, which is probably more than any other doctor in New England has seen. He said that on average about 1 new case is diagnosed each year in the state of Massachusetts. We always knew that Julia was special, but this is ridiculous.

JDMS is most effectively treated with Prednisone. Prednisone is an adrenal steroid that acts both as an anti-inflammatory and an immune system depressant, thus attacking both the symptoms of JDMS and the underlying cause. Treatment usually requires a 3-day admittance to the hospital to administer a high-dose course of Prednisone, followed by daily oral Prednisone until all the blood tests are normal, which can take from months to years. Then, the Prednisone can be tapered off (sudden withdrawl of Prednisone can cause adrenal failure and other problems) and discontinued, or reduced to a low maintenance level, depending on the results. However, in Julia's case, the fact that this was caught so early and that Julia is showing no symptoms aside from the rash, Dr. S. decided to forego the high-dose Prednisone therapy and just begin the oral Prednisone instead. The recommended dose is 1-2mg per kg of body weight, so he is beginning Julia at about 1.5mg/kg. She will get a total of 40mg per day to start, and she will take 20mg twice a day, thus avoiding having to take medicine at school, which can stigmatize her. Prednisone has many side effects, including mood changes, increased appetite, cravings for salty foods, bloating, sleeplessness, decreased calcium absorption, and a host of others.

Before Prednisone therapy could begin, we had to make sure that Julia had all her required immunizations and/or previously had the common childhood diseases or infections. No immunizations can be administered during Prednisone therapy. In particular, they asked about chicken pox; getting it while on Prednisone can be very serious business due to the depression of the immune system. Julia had chicken pox when she was 2, and she has already had all her required immunizations, so this was not a problem for us.

The other recommended drug treatment is Plaquenil (generic name: Hydroxychloroquine). This drug is an anti-malarial drug that is also described as "anti-rheumatic". It helps reduce inflammation in body tissues, and in Julia's case is expected to attack her rash. Dr S. expects that it will take at least 6 months of therapy with Plaquenil to eliminate the rash. Some of the long-term side effects of Plaquenil include eye changes, so Julia will need to have an eye exam at least every six months.

Dr. S. is, I believe wisely, a firm believer in "one change at a time" - only change one element of treatment so that any adverse effects can be easily traced to their source. He recommended that we begin the Prednisone therapy immediately, and observe any changes in Julia, especially any side effects. The plaquenil therapy will begin in a week, assuming that there are no problems with the Prednisone.

Julia had to have blood and urine samples taken for additional testing. Phlebotomy was actually one of the most discouraging parts of our whole visit to the hospital. All the kids waiting to have blood drawn were whining, complaining, or bargaining. The screams of the kids having blood taken were difficult to ignore. We had Julia give a urine sample first. Julia was as brave as could be expected when it was her turn to get a needle, but she cried a lot, too. Dr. S. offered to prescribe an anesthetic creme that is applied to the arm where blood is to be taken about an hour beforehand. We will take him up on it next time, for sure.

Julia also had an MRI exam to provide a "baseline" indication of muscle inflammation. MRI works by exposing the target part of the body to a huge magnetic field that is generated by superconducting magnets. The magnetic field aligns charged particles of matter found naturally in the body and these particles can then be detected. A computer processes all the detection data and creates and astoundingly high resolution image of the inside of the body. Julia's MRI of her legs showed inflammation of her skin and muscle tissue as white patches among a dark field of tissue. She was very brave - the MRI machine is very intimidating and scary, requiring the patient to remain perfectly motionless in a tunnel perhaps 2 feet in diameter while loud pops, clicks, and buzzes echo all around. The MRI doctor said that Julia's MRI images were among the clearest he had ever seen in a child, because she has stayed so still during the procedure.

We filled our prescriptions while still at Children's, and administered Julia's first Prednisone dose on the spot. The pharmacist said that her medication should be taken with food, while Dr S. said specifically that that was not required. When pressed, the pharmacist said that they usually recommend the more conservative approach, but that the doctor's express orders supersede them. We ran into Dr. A.W. on our way out, and she said that the medicine can be taken on an empty stomach, but if any stomach upset occurs, we should try the full-stomach approach.

Current Drug Dose: Prednisone: 40mg/day Plaquenil: 200mg/day

Saturday, March 7

First full day on Prednisone. Julia has definitely shown increased appetite, but we decided that we would monitor her diet very closely. Our first rule is that she can only eat fresh fruits and vegetables for snacks between meals. We are trying to ensure that she is getting enough calcium, since Prednisone can interfere with calcium absorption - 3-4 8 ounce glasses a day is our target. We are also going to avoid fast food and other high-fat food sources, and limit her intake of sweets at mealtimes. She has also been more demanding, impatient, and interrupting than usual, although we are not being exactly objective since we are on the lookout for this behavior. No other adverse side effects noticed.

Sunday, March 8

After church this morning, our priest administered the Sacrament of the Sick to Julia, and encouraged her to come for it every month. Julia thought this was very special. She also knows that all of our Marriage Encounter friends are praying for her.

This afternoon, we went to a Pool Party being held at the New England Rehabilitation Hospital by a support group of parents of children with rheumatic diseases. This groups is mostly kids with pediatric arthritis, but JDMS and other diseases are covered as well. Julia had a great time swimming in the rehab pool, but the warm water really made her skin rash look bad - her face was very flushed, and her the rash on her arms and legs was extremely pronounced. We met several parents, and the administrators were very helpful and friendly, and gave us some literature to look at. Overall, it was fun, and even though we didn't meet any other JDMS families, it felt good not to be alone.

Julia was pretty much like yesterday. No severe adverse reactions, but somewhat moody and noticibly more hungry. Just after bedtime, she complained about having the feeling that there was something in her throat, making it uncomfortable to swallow. It happened just the once, but we'll mention it to the doctors when we call this week.

Monday, March 9

Julia was relatively cranky this morning, we had a tough time getting her out of bed and having her get herself ready to go. She was up a bit late last night, but not that late. Her rash is noticibly better today, but all along over the past few weeks we have seen good days and bad days. Perhaps the time in the pool yesterday helped. The Prednisone is not supposed to have any effect on the rash.

Julia went back to school today. We gave a note of explanation to give to her teacher, the school nurse, and the principal to explain briefly about the disease and our concerns about her diet and the other side effects of the drugs. She had to make up a spelling test from Friday (Perfect score! Way to go Julia!), and some other in-class work.

Today, we received a book we had ordered from Amazon.com called "Coping With Prednisone" by Eugenia Zukerman and Julie R. Ingelfinger, M.D. It came to us highly recommended. If you'd like to buy a copy, just click on it below and order it online.

Coping With Prednisone
Coping With Prednisone (and other cortisone-related medicines) -
It May Work Miracles, But How Do You Handle the Side Effects?

by Eugenia Zukerman and Julie R. Ingelfinger, M.D.

Tuesday, March 10

This morning, Julia complained that she was having a bit of trouble swallowing the Prednisone pills. This is the first time she has complained about pill-taking - she's been swallowing pills since she was 4 without any trouble, even large capsules. We suggested she try putting the pill farther back on her tongue, and that seemed to help. I hope this does not develop into a problem, it is a real battle to get her to take either liquids or chewables.

Dr. A.W. from Children's called this morning. She has some of Julia's test results back, and the news on what we have is very good. Tests for White Blood Cell count, Platelets, bone marrow (anemia), urine tests, kidney function, immunoglobulins and compliment (these last 2 are immune system tests) all came back normal. They also took several other more specific tests that had to be sent out to be performed, and they will be back late this week or early next. Dr. A.W also said that we need to monitor Julia over time for changes in her immune system, and re-test her periodically depending on how she's doing and what medication she is taking. Finally, after describing the swallowing incident from Sunday night to her, Dr. A.W. said that it didn't sound like a problem, but to keep an eye on it. Overall, this call was reassuring. Thanks Dr. A.W.!

3/3 Test: 11.8 659 301 60 36
Normal Range: 0.0-7.0 4-150 110-295 10-34 6-59

Julia went to her regular swimming lessons last night, and all went well. Her rash continues to look better, even after the swimming and her shower afterwards. Perhaps the Prednisone is starting to have a positive effect? It's tempting to get our hopes up, but we know her rash has had good and bad days before.

Wednesday, March 11

Julia's face rash continues to look better this morning. It is still obvious that she has a rash, but especially on her knuckles it is looking pretty good. Also, her mood was much better this morning.

She had both gym class in school today, and dance lessons after school, and she didn't complain at all about being tired today. That's the first time she hasn't complained about being tired on a Wednesday for a while. Also, she has had no lapse at all in school, all her school papers are coming home in great shape as usual, and there have been no complaints from anyone at school. However, the rash on her knuckles looks particularly bad this evening, much worse than this morning, while her face continues to look OK. We had a sharp drop in temperature outside today; don't know if that could be having any effect.

Thursday, March 12

Julia was particularly cranky this morning - every little thing bothered her (having to do her morning routine, getting her hair brushed hurt on every stroke, taking her medicine, etc.), and did we ever hear about it. She is usually pretty good in the mornings, but today was really frustrating. The rash on her hands still looked pretty bad this morning, too.

Swimming class went well tonight. Julia's rash, especially on the knees and elbows, looked worse overall. However, her spirits were very good tonight, partly because her favorite sitters were coming over so we could go to a meeting.

Friday, March 13

Today, we started Julia on Plaquenil (actually, in this case, we are using the generic equivalent hydroxychloroquine, but for the sake of clarity I will call it "Plaquenil"). The Plaquenil tablets are somewhat smaller than the Prednisone, and they are oval shaped as opposed to the round Prednisone, so they are quite a bit easier for Julia to swallow. She only takes one Plaquenil a day, in the morning with her Prednisone. Her dose is 200mg per day, or about 7.4 mg/kg.

This morning, the rash looks about the same as last night. I may stop reporting on the rash daily because it is, as it has been for the past month, very variable from day to day. I will report any notable changes and try to notice general trends in the condition of the rash.

Overall, I have to say that Julia's overall mood was pretty good today. We are trying very hard not to cave in on giving her everything she asks for, especially in the way of food.

Saturday, March 14

No side effects from the Plaquenil are detectable whatsoever. Her mood is pretty good again today, too, and she has hardly complained about being tired all week. Good stuff.

I have received several emails from people who have seen this web page, and I appreciate all of them. I am glad that you're all finding this useful. I also received email today about enrolling Julia in a national JDMS study. He seemed very enthusiastic, and promised to send us some more information.

Sunday, March 15

I ran across the drugstore prescription information sheets for the Prednisone and Plaquenil today, and I wanted to mention and few things that I hadn't heard elsewhere, and highlight some other things I had heard.

Prednisone: A "corticosteroid", which in general reduces swelling and inflammation in the body. If the drug is suddenly withdrawn, symptoms can include extreme fatigue, weakness, dizziness, and stomach upset. Short term side effects, which usually moderate as the body adjusts to it, include dizziness, nausea, indigestion, increased appetite, weight gain, weakness, or sleep disturbance. Long-term side effects are not listed.

Under "Precautions", it warns about a host of other conditions that can cause problems when Prednisone is taken (none are a problem for us). It also says that vaccinations, immunizations, and skin tests should not be given while taking Prednisone. Luckily Julia has "had all her shots" already and isn't scheduled to need one for several years; we hope she'll be off Prednisone by then. We are also warned that succeptability to common viruses and other diseases is increased due to the immune system suppression caused by the drug. There are also an array of possible drug interactions, but none that affect us. There is also a protocol to follow if a dose is missed; we'll try not to forget.

Interesting note: they suggest that long-term users wear or carry a medical alert identification, stating that a corticosteriod is being taken. This seems like a sensible precaution, we'll ask the doctor about this when we go there next week.

Plaquenil (hydroxychloroquine): Used to treat lupus and rheumatoid arthritis and to prevent malaria. Side effects are similar to the Prednisone, but can also include headaches and changes in vision or hearing. I now recall that Dr. S. said that we would have to have Julia taken to an eye doctor at least every 6 months while on the Plaquenil. Perhaps we should take her now to measure a baseline? I'll have to remember to ask. A note on the sheet says "Children are very sensitive to the effects of this medication. It is important to keep this and all medications out of the reach of children." Great. Now what do we do? ;)

Monday, March 16

Tried to get Dr. A.W. at Children's on the phone all day today. Finally had her paged late in the afternoon and we spoke at length to her about Julia. She said that they are still awaiting more blood test results, in particular one for Scleroderma, another rare auto-immune disorder where the skin gradually hardens. She also explained that her high ANA test result alone - even if all the other tests come back normal - can be an indicator for overlap syndrome. She emphasized that the treatment now is the same no matter the results of these tests, and Julia will need to be monitored closely in the future to determine if there's anything else going on.

Tuesday, March 17

Julia seems to be catching a cold. We were told that she might catch more colds and such, and they would tend to last longer than they would otherwise. She has been coughing quite a bit this afternoon and evening, right up to bedtime. We didn't give her any cough medicine before bed, but she woke us up coughing about 11:00, and we gave her one "Liqui-Gel" capsule for coughs at that time. She slept well the rest of the night.

Julia's rash, especially on her hands, elbows, and knees, has made her skin very dry. It's starting to actually look painful in places, like it will crack. Ouch. We've started putting lotion or moisturizing ointment on these places 2 or 3 times a day, and she now slathers on hand cream at bedtime and sleeps with gloves on. Maybe this treatment will help out.

Wednesday, March 18

More general coughing and sneezing today, it looks like this is turning into a full-blown cold. Sigh. Not only that, but gym class got cancelled today because the gym teacher wasn't in. At least Dance lessons were on.

I was surfing the web today and ran across an excellent, comprehensive site on drugs, RxList. Highly recommended. I've got detailed report on Prednisone, Plaquenil, and Methotrexate (may need this someday, who knows?).

Friday, March 20

Julia had trouble falling asleep again last night, had to have another cough pill. She's not coughing or sneezing too much during the day, but when she lies down at night, it starts up.

The various lotions that we're using on the rash seem to be keeping the dryness under control. We're using something called Udderly sMOOth at night, and Johnson's Baby Lotion during the day.

Monday, March 23

Julia's cold is hanging on, she was complaining this morning that her ear was clogged, probably caused by congestion. She has been coughing all weekend, although she has been feeling pretty well aside from the cough.

Julia's rash remains about the same. The skin dryness at the rash sites seems under control with the twice-a-day topical moisturizers. The rash itself is as variable as ever, sometimes looking much improved, other times looking very bad. Her rash still looks really bad after she exerts herself (she built a little snow fort in our front yard yesterday), or after she takes a hot shower, although this effect seems to have moderated lately. We are going to have to be patient with this rash.

Looking back over the past week, I have to say that Julia's mood is greatly improved over her first week on Prednisone. She has been very much more herself, which is a joy to see. She is coping with swallowing her medicine much better, too, and she has started a morning ritual where she takes her pills at the same time her mom takes her vitamins. She has been drinking plenty of milk, and we have managed to avoid salty foods as much as possible. While her appetite has continued to be increased, she seems very much in control of it and has been great about it when we have had to say no to forbidden snacks and extra-large portions. Overall, the Prednisone side effects have been well within expectations, and we have seen no side effects at all from the Plaquenil.

I sent in the consent forms today to get Julia enrolled in the New Onset JDMS Registry, a study funded by the National Institutes of Health's NIAMS grant program. The study is designed to determine if there is a pattern of factors present at the onset of JDMS, and to determine if race, gender, or age affects the course of the disease. They are currently in the third year of a 5-year study.

Tuesday, March 24

It figures.

The day we're bringing Julia back to Children's Hospital for a checkup is the day her rash looks the worst in the past two weeks. When it looks this bad, it's hard to shake the feeling that we should be doing something more, but of course we are doing everything we can.

While we were waiting, Julia got height and weight done, and she gained 1 pound since last visit. This is not a huge increase, but it does indicate that we need to be much more careful about Julia's diet. I think the problem may be quantities of food at meal times; we will try to keep portions under control, and keep up with the "fruits and vegetables only" rule for between meal snacks. Also while waiting, we saw another little girl with a rash just like Julia's, only maybe a bit worse. My wife and I both noticed it, but dismissed it as "what are the odds...". Later, during Julia's physical exam, we found out that that girl was another JDMS patient of Dr. S.'s who happened to be in on the same day. I guess the odds are actually pretty good - if you happen to be in the Rheumatology department at Children's Hospital.

Today's visit began with (another) history of the JDMS, this time conducted by Dr. B.W., a rheumatology resident at Children's. We went through the whole story again, pretty much covering the essential stuff in this web page. Maybe I should have just given her the URL? After she got all the info, we asked our questions. Immunizations? She shouldn't need any, and live virus vaccines, like polio, are completely out, but some protein-based vaccines would be ok. If the need arose, we would have to ask specifically. Eye exam to establish a baseline? She said that would be a good idea, but later Dr.S. said that they assume that, because eye problems are very rare in small kids, they just assume that if they find any anomalies at 6 months, that they are caused by the drug therapy - so no eye exam is needed now. Should Julia's mom get tested for ANA, since it appears that some auto-immune disease runs on her side of the family? No; what would we do with the information if it were positive, besides worry?

After a tiresome wait, a nurse came in and talked to us for a while. For Julia's dry skin, she suggested Eucerin or "Hydrated Petrolatum", which is petroleum jelly with water whipped into it to make it act as a moisturizer. She also applied a cream containing a prescription anaesthetic, EMLA (Eutectic Mixture Of Local Anesthetics - lidocaine 2.5% & prilocaine 2.5%), to the insides of both of Julia's arms, to make collecting blood easier later on. The cream was covered by a transparent bandage called Tegaderm.

Soon, Dr. S. and Dr. A.W. came in with a small army - another "fellow", a couple of resident physicians (including Dr. B.W.), and a medical student. Dr. S. asked us how Julia was doing, and the proceeded to perform a detailed physical exam, explaining each step to his entourage. He showed them "Gottron's Papules". small, wart-like bumps on the skin of her hands where the rash is. He examined the capillaries in her fingernail beds, saying how obvious and pronounced they were. He showed them a redness of Julia's palms, and later the soles of her feet, and called that vasculitis. He pointed out how pronounced her rash was on her "extensor surfaces" - elbows, knees, ankles, and knuckles. He showed that Julia does not have a "shawl sign" - a rash that drapes across the upper chest and shoulders, but said that it is common in JDMS. He said that red ears are possible, and that Julia's right ear is already slightly red.

He asked his students for a definition of "heliotrope", the name for the rash around the eyes - which by chance was the A.Word.A.Day choice for March 25th. The word derives from the Greek, helios-, meaning sun, and -tropos, mesning "loving" or "moving toward", and so means "sun-loving". The dictionary also lists heliotrope as a reddish-purplish color, which presumably is the color of the typical JDMS rash at the upper eyelids.

He did muscle strength tests, of her legs, arms, and neck. He said that the slight weakness he detected in Julia's neck flexor muscle last time was gone, indicating an improvement. This is very good news.

The disappointing news is that the tests we were waiting for since last visit are still not in. They are not done very often, so they "batch" them when enough requests for those tests come in. Dr. S. indicated that he expected, based on Julia's exam, that they would be coming back negative anyway. The tests we are waiting for are "von Willebrand Factor (vWF)" and "Scleroderma 70". He also ordered some of the same tests we had done 3 weeks ago, including: AST (SGOT), ALT (SGPT), LDH (lactate dehydrogenase), Aldolase, and CK Total (CPK). BTW, with the EMLA anaesthetic applied to Julia's arms, the hematology visit was a complete non-event. Julia said it was completely painless. We will be doing this every time from now on.

We came away from this visit in excellent spirits. Dr. S. seemed very happy with both Julia's progress and her minimal side effects of the medicine.

Friday, March 27

Well, it's a beautiful day here, the first really glorious spring day - should be mostly sunny and 75 here. Julia will probably be spending a few hours after school playing outside today. We need to start remembering to pack a hat and sunscreen for her. The Plaquenil makes her especially sensitive to the sun, and her rash is making her skin dry and sensitive already. We're have some sunscreen left over from last year, but I don't think that's going to cut it. We have to find some that is PABA free, SPF 15 or higher, UVA & UVB protecting, hypoallergenic, Non-comedogenic (doesn't stimulate acne), and waterproof. Her rash is so variable from day to day, even hour to hour, we don't want to risk making it worse by being lazy about the sunscreen.

Saturday, March 28

Well, it was very warm today - our kitchen thermometer said 82 this afternoon, which is quite remarkable for New England in March. Julia's rash was very bad today, especially on her face. This is most probably because of the heat. I have resigned myself to having to see that same rash all summer long.

Sunday, March 29

Julia's face has looked a little puffy this weekend, especially her cheeks. Her appetite continues to be pretty high; she's eating bigger portions these days, and I think she may be continuing to put on weight. I think we have snacks pretty much under control, though, but she's compensating at meal times.

We had some gorgeous weather the past few days. We took a long walk together today, while Julia rode her bike around the block. She does not have any trouble pedaling the bike, which I feared she might. We also got her some sunscreen today - It meets all the requirements, and is SPF 45. We will be packing a bottle, and sending one with her to her day care.

Tuesday, March 31

I spoke to Dr. A.W. both last night and this morning. She did not have the test results with her last night, so at that time, we just talked in general terms about Julia's condition, and the cold she has been fighting. Again, she said that Julia will get more colds and the like, and they will tend to hang on longer.

When I spoke to Dr. A.W this morning, she had the complete blood test results for me. Here they are:

3/3 Test: 11.8 659 301 60 36
3/24 Test: 5.0 39 227 15 12
Normal Range: 0.0-7.0 4-150 110-295 10-34 6-59

This is great news - all her blood work is now in the "normal" range. Especially encouraging to me is the dramatic drop in CK level.

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Updated September 1, 1998
Copyright © 1998 by Ralph Becker <ralphb@whoever.com> send me Feedback!
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