Wednesday, January 28, 2009

Shot night!

Every other Wednesday night is shot night. Parent's who's children are on this medication know very well that shot night is no fun! Humira is a very painful injection to give for him and me!
Although Jacob has the lidocaine to help numb the injection area, the medication itself burns terribly. I am amazed that he has come so far in his fear of getting the shot. Tonight he has asked me early to get the "shot over with". He is so brave! It helps keep me brave!

Very scary drive, but good news!

We just got home from Dr. Foster's appointment. It is snowing heavily outside and the drive was a nightmare! I am glad we made it back safely!

The nice thing about braving the elements today was that Dr. Foster's office was very quiet. There must of been cancellations. We were out of there so quick today.

Jacob's eyes still remain quiet. It is six months of quiet. His eye pressures were 16 today in both eyes. Well within normal range! Jacob did great with the pressure test. He is finally comfortable with the procedure.

I finally remembered to ask Dr. Foster today if Jacob needed to take pre-medication antibiotics before dental work and he said it was a good idea. The medications he is on to fight his jra and uveitis are immune-suppressants, there for we need to be sure he doesn't contract a bacterial infection during dental treatment. The risk is small, but it is worth being cautious.

Sunday, January 25, 2009

Pictures of Inside a JRA knee

These pictures were taken during Jacob's knee synovectomy last March. You can see the excessive tissue growth. You can see the instrument they were using to clean all of the diseased tissue out. If you click on the pictures they will enlarge.

Friday, January 23, 2009

One year today

Today, January 23, 2009 marks the one year anniversary of Jacob's diagnosis of Uveitis. I can't believe that it has been a year already! Where did the time go?

I can still remember the day so clearly. It had been a while since we had been to see the opthamologist. We went in there thinking it was going to be just a routine check-up. Why shouldn't it be. They have always been.

We got the surprise of a lifetime that day. A diagnosis of uveitis. When the doctor said that Jacob had uveitis I had no idea of the battle it would become.

Looking back over the last year, I have learned so much about the disease. A disease that no one has ever heard of. A disease that is so rare, that it is estimated that only 15 cases out of 100,000 people have it in our population. Jacob is now one of those statistics.

To this day there are still 10% of people with Uveitis going blind. I KNOW Jacob will not be in this statistic. We are so very lucky to be able to receive the care he has.

Last year this time, a journey had begun. Now we continue the journey with complete confidence that he will continue to fight this successfully. I pray the medication he is on will continue to "trick" his immune system and keep his eyes and joints quiet.

We see Dr. Foster next Wednesday. Please pray he is still doing well. It is always a surprise because this disease is so silent.

Saturday, January 10, 2009

Skiing again!

The side effects of a very suppressed immune system=a great time skiing!!

Monday, January 5, 2009

Orthopedic and Rheumatology appointment

We had a very long day today! We left the house at 9:30am and got hime at 5:30!
We saw the orthopedic doctor, the Rheumatologist and he had xrays of his spine.

Rheumatology: Very good visit. The doctor noticed no swelling in any joints. His left knee still has some extra growth to it. Not too much of a concern at this point though. Jacob had been complaining off and on about his fingers still bothering him. The doctor said to just keep watch of them there was no visable swelling to them. We return in 3 months.

Orthopedic: Overall good visit. It is confirmed though that he has scoliosis. Just a mild form of it at this point. This could of been caused from the leg length issue. We were able to see the xray of his back and I thought his spine looked way off the doctor said it is just mild though. He said we still need to watch it very carefully. It may get worse as he grows. In that case he would need a back brace. I don't even want to think of that! As far as the knee goes, the doctor thought it looked pretty good. He said though by this point the synovium would of grown back. So we are just to keep watch on it. I asked him about why his knee still hurts when he does a lot of exercise on it. Like running a lot or walking up and down a hill after sledding, he said that it shouldn't be from the surgery. It has been too long out of surgery to still have pain from it. He said it is likely from the jra. As long as it isn't keeping him from doing things then leave be. Sad to think at his age he "suffers" the day after playing too hard.

Looking back an entire year ago we have come along way. It was this week last year he restarted the JRA. The week this journey began again. We are moving forward with high hopes that he will still beat this disease.

Next visit is with Dr. Foster at the end of the month. We return to the Rheumatologist in 3 months and the orthopedic in six months.

Sunday, January 4, 2009

New Publication on study of Cancer risk from meds used to treat ocular inflammatory disease

Long-term risk of malignancy among patients treated with immunosuppressive agents for ocular inflammation: a critical assessment of the evidence.

Ocular Inflammation Service, Scheie Eye Institute, The University of Pennsylvania, Philadelphia, Pennsylvania 19104, USA.

PURPOSE: To critically assess potentially carcinogenic effects of immunosuppressive therapy in the ocular inflammation setting. DESIGN: Focused evidence assessment. METHODS: Relevant publications were identified by MEDLINE and EMBASE queries and reference list searches. RESULTS: Extrapolation from transplant, rheumatology, skin disease, and inflammatory bowel disease cohorts to the ocular inflammation setting suggest that: 1) alkylating agents increase hematologic malignancy risk and cyclophosphamide increases bladder cancer risk, but less so with < or ="18" color="#000099">tumor necrosis factor (TNF) inhibitors may accelerate diagnosis of cancer in the first six to 12 months, but probably do not increase long-term cancer risk; and 4) changes in risk with methotrexate, mycophenolate mofetil, and daclizumab appear negligible, although nontransplant data are limited for the latter agents. Immunosuppression in general may increase skin cancer risk in a sun exposure-dependent manner. CONCLUSION: Use of alkylating agents for a limited duration seems justifiable for severe, vision-threatening disease, but otherwise cancer risk may be a relevant constraint on use of this approach. Antimetabolites, daclizumab, TNF inhibitors, and calcineurin inhibitors probably do not increase cancer risk to a degree that outweighs the expected benefits of therapy. Monitoring for skin cancer may be useful for highly sun-exposed patients. Data from ocular inflammation patients are needed to confirm the conclusions made in this analysis by extrapolation.

PMID: 18579112 [PubMed - indexed for MEDLINE]