June 24, 2003 Thank you all very much for your prayers, calls, emails and cards. It means so much to have such wonderful people thinking about our family.

Jordan was released from the hospital on Thursday, June 20th. She was admitted 10 days earlier. On Friday, June 10, Jordan complained of pain in her right elbow. Her father called Dr L to request antibiotics for an apparent infected elbow. Within hours, her whole arm has swollen almost twice its normal size. I called Dr C. to inform him that she had not been able to take her Enbrel or Methotrexate injections with any regularity over the past month. (she had been sick, elbow infected and we had been out of town) I also told him about her arm and asked what he suggested. He said to take her to ER and let a Dr see if she need antibiotics by IV. Naturally, the ER Dr wasnt sure, so I hade him call Dr C for instructions. Jordan was admitted with 102 fever and Dr L, our family DR, would be the attending physician. There was no improvement over the next day. Dr L was going on vacation and felt she might be better treated in San Antonio were her specialist was. Jordan was transported by EMS. She had not received her JDM meds since Monday. We spent the next nine days in Santa Rosa Hospital. After numerous tests, including a CT scan, MRI, sonogram, the cause of the swelling in her upper arm could not be determined. What is a blood clot? infection? or calcium milk? A resident Dr tried to take a sample of the fluid with an needle, but could draw nothing out. It was determined that she would have to be cut open. Thurday we were taken to the pre-op room and withing minutes, her armed began to leak.....POUR out a milk subtance. At least 2 cups of fluid that appeared to be calcium milk. I was sure God had answered my prayers. Unfortunately, the attending surgeon thought otherwise. I refused the surgery in hopes to get another opinion from Dr. C. Jordan continued to run a temperature of 102.9 over the next few days. Friday, we agreed to have the surgery. An incision was made at the top of her upper arm and another across her elbow. They supposedly cleaned the calcium and infection from her arm. The left the incisions to heal on their own. She is healing very well considering the condition of her immune system. Her temp did not return to normal until the following Thursday. She was released and must return Thursday and Friday to see her Pediatric Rhuemetologist and Surgeon. It was a scary time for us. Im glad that is behind us. NOW, our concerns are putting her back on her meds. We dont know what to think any more. Her Aldolase was 11 on May 27. On June 12 her Aldolase was 8.5. On June 16, it dropped again to 5.8. She had not received regular injections over the past few weeks. Why did her Aldolase drop to normal? Did the antibiotics cause that? She was on Vancomycin IV 800 mg every 8 hours and Claforan IV 800 mg every 8 hoiurs from June 11 throught the 17th. On the 17 she was changed to Nafcillin. She was sent home with Augmentin 875 mg 2x daily and Rifampin 300 mgs 2xdaily for the next 2-3 weeks.

I know very little about JDM being treated with IV antibiotics but am wondering about the drugs Jordan was given. Could these drugs improved her JDM? We've been concerned about her Aldolase over the past 10 months. Her other labs have been normal except for the Aldolase.

Her MRI and scans showed her arm has a sheet of calcium. Dr. C seems to think we need to get her back on her meds asap. We want to know more about why her Aldolase has dropped.

Jordan went to church on Sunday. On the way home, she told me that she didnt think she need to take any of meds anymore. She said that after she finishes with her antibiotics, she didnt think she need the JDM drugs. She told me that the youth group prayer for her and she felt something.

I pray she did. I pray God heals her quickly. Please keep Jordan in your prayers.

If anyone has any ideas about the antibiotics or lab results, please email me at jpe5@axs4u.net.

January 24, 2003

Jordan's aldolase has been high the past 3 months. 10, 11, 12 and should be less that 8. She has calcifications on both elbows that dont seem to improve. Her Dr wants her to take a new drug called ENBREL. If you or your loved one takes or has taken this drug please contact me. I would like to have any information you can share as soon as possible. Her prescription is ready to be picked up............but Im scared to give it to her. Thank you in advance for your help and prayers.

January 28, 2003

Jordan did not feel well when came home from school this afternoon. She has complained of chest and back pain for the past few days. Once again, she may be coming down with pneumonia. She seems to get it at least once a year. She has a slight fever and sounds a little congested. I plain to take her in to our family dr tomorrow. Because she didnt feel well, I called Dr. C, her PR, and asked him about a few concerns.

1. Should we give her the methotrexate injection tomorrow since she doesnt feel well?

2. Should we begin the Enbrel?

3. Should we be concerned about her taking her second dose of DTP?

4. Is Enbrel approved for JDMS?

All answers were "No." The 4th question was the one that concerns me most. He said that it is only approved for RA and similar diseases presently, but he has used it for other JDMS patients and feels it would be beneficial for Jordan and expects good results. He asked if I had any difficulty getting it and was it covered by her insurance. Fortunately, it was covered. I only had to pay $25.00 for it. It was listed right at $1400.00 for a months supply (8 injections) Jordan heard me talking to him. She wanted to know the side effects ..........especially being concerned that she would get fat (remembering prednisone) and if so, indicating refusal to take it. I told her weight gain was not listed as a side effect.

I guess I should be thankful that her insurance is covering it. However, my attention is directed toward success JDMS use and the side effects. I contacted the Drs office in Arizona that is doing the JDMS / Enbrel research. They would like to have Jordan participate. They faxed me info on the study and information about Enbrel. I passed on them administering it and doing the exams on Jordan, but offered to send lab work and information on her results, if she indeed takes it.

I am also waiting on advice from another Dr. familiar with JDMS. I hate to see Jordan feeling bad, but I am so thankful for the delay. I want to be able to feel some confidence in giving her Enbrel and hopefully, over the next few days, I can gather enough information to make an educated decision.

I am so happy for Julia and her family. She is off all medications and doing great. Praise God! I pray God will heal Jordan soon. Please keep Jordan and all the JDMS kids in your prayers.

October 2002

Jordan is doing very well. She is enjoying her first year of high school. Well, most of it. She's been struggling with a new class schedule and having a hard time learning to study at home. In the past, she was able to retain the information reviewed in class. The new schedule has shorter class periods and she has more homework. She's been working hard, so hopefully school will get easier for her.

She tried out and made the Freshman Cheerleading squad. She also made the freshman basketball team. She wanted to improve her cheer skills, so we enrolled her in private lessons at an area cheer school. Her greatest improvement was her strength. The chartwheels and tumbling needs alot of work. We had to cut back on her class because the time took away from her study time. She is physically doing well.

Her lab work could be better. Her aldolase has been higher over the past few months. We've gone back to taking Methotrexate by pill because of convenience. We had begun letting her family dr give her shot but found it difficult to get by his office before he closed and without missing school. I felt like we had been letting 8 to 10 days get by before she got her injection and that may have caused the rise in the aldolase. With the pills, we could take it more consistantly. We shall soon see if that makes a difference. A few weeks ago, Jordan had an MRI on her elbow to check for inflamation. She has had her elbow infected from the calcifications a few times over the past few months.

Jordan accepts the fact that she must take all the meds and generally does a good job keeping up with them herself. We continue to pray God will heal her quickly and we can put this behind us. We appreciate your thoughts and prayers.